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His team is responsible for broad dissemination and active public engagement around the Institute’s diverse portfolio of scholarship. This includes rapid-response research in addition to managing/curating the institute’s internet-based assets and successful, social media-based, public-engagement efforts, such as: The Berman Institute Bioethics Bulletin Blog, Facebook page, Twitter feed, YouTube Channel, and Weekly Bioethics Email Digests. <br /> <br />Alan and his team also support a broad range of research projects and programs, including the Berman Institute’s science programs: the Stem Cell Policy and Ethics (SCOPE) Program; the Program in Ethics and Brain Sciences (PEBS-Neuroethics); and the Hinxton Group, an international consortium on stem cells, ethics and law. <br /> <br />Alan’s research interests are diverse, and have most recently focused on bioethics and social media, global bioethics, stem cell science and neuroethics. <br /> <br />Alan received his Master of Bioethics degree from the University of Pennsylvania, and his undergraduate degree in History and Psychology from Rutgers University. <br /> <br />On Twitter: @aregenberg<br /><div class="js-profile-less-about u-linkUnstyled u-tcGrayDarker u-textDecorationUnderline u-displayNone">less</div></div></div><div class="ri-section"><div class="ri-section-header"><span>Interests</span></div><div class="ri-tags-container"><a data-click-track="profile-user-info-expand-research-interests" data-has-card-for-ri-list="282307" href="https://www.academia.edu/Documents/in/Bioethics"><div id="js-react-on-rails-context" style="display:none" data-rails-context="{"inMailer":false,"i18nLocale":"en","i18nDefaultLocale":"en","href":"https://johnshopkins.academia.edu/AlanRegenberg","location":"/AlanRegenberg","scheme":"https","host":"johnshopkins.academia.edu","port":null,"pathname":"/AlanRegenberg","search":null,"httpAcceptLanguage":null,"serverSide":false}"></div> <div class="js-react-on-rails-component" style="display:none" data-component-name="Pill" data-props="{"color":"gray","children":["Bioethics"]}" data-trace="false" data-dom-id="Pill-react-component-1fab0689-ffa8-4561-aa41-46ce59d93c66"></div> <div id="Pill-react-component-1fab0689-ffa8-4561-aa41-46ce59d93c66"></div> </a><a data-click-track="profile-user-info-expand-research-interests" data-has-card-for-ri-list="282307" href="https://www.academia.edu/Documents/in/Research_Ethics"><div class="js-react-on-rails-component" style="display:none" data-component-name="Pill" data-props="{"color":"gray","children":["Research Ethics"]}" data-trace="false" data-dom-id="Pill-react-component-2fc8a2a9-6067-4d3f-92a3-470e167fccde"></div> <div id="Pill-react-component-2fc8a2a9-6067-4d3f-92a3-470e167fccde"></div> </a><a data-click-track="profile-user-info-expand-research-interests" data-has-card-for-ri-list="282307" href="https://www.academia.edu/Documents/in/Philosophy_of_Medicine"><div class="js-react-on-rails-component" style="display:none" data-component-name="Pill" data-props="{"color":"gray","children":["Philosophy of Medicine"]}" data-trace="false" 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data-dom-id="Pill-react-component-65808a99-7cae-4168-bbb8-1922de9cdc72"></div> <div id="Pill-react-component-65808a99-7cae-4168-bbb8-1922de9cdc72"></div> </a></div></div><div class="external-links-container"><ul class="profile-links new-profile js-UserInfo-social"><li class="profile-profiles js-social-profiles-container"><i class="fa fa-spin fa-spinner"></i></li></ul></div></div></div><div class="right-panel-container"><div class="user-content-wrapper"><div class="uploads-container" id="social-redesign-work-container"><div class="upload-header"><h2 class="ds2-5-heading-sans-serif-xs">Uploads</h2></div><div class="documents-container backbone-social-profile-documents" style="width: 100%;"><div class="u-taCenter"></div><div class="profile--tab_content_container js-tab-pane tab-pane active" id="all"><div class="profile--tab_heading_container js-section-heading" data-section="Papers" id="Papers"><h3 class="profile--tab_heading_container">Papers by Alan Regenberg</h3></div><div class="js-work-strip profile--work_container" data-work-id="123094375"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/123094375/Ethics_and_Potential_Opportunities_and_Risks_of_Corporate_Uses_of_Socioeconomic_Polygenic_Risk_Scores"><img alt="Research paper thumbnail of Ethics and Potential Opportunities and Risks of Corporate Uses of Socioeconomic Polygenic Risk Scores" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/123094375/Ethics_and_Potential_Opportunities_and_Risks_of_Corporate_Uses_of_Socioeconomic_Polygenic_Risk_Scores">Ethics and Potential Opportunities and Risks of Corporate Uses of Socioeconomic Polygenic Risk Scores</a></div><div class="wp-workCard_item"><span>Social Science Research Network</span><span>, Dec 31, 2023</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="123094375"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="123094375"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 123094375; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) 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})(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=123094375]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":123094375,"title":"Ethics and Potential Opportunities and Risks of Corporate Uses of Socioeconomic Polygenic Risk Scores","translated_title":"","metadata":{"publisher":"Social Science Electronic Publishing","publication_date":{"day":31,"month":12,"year":2023,"errors":{}},"publication_name":"Social Science Research 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alt="Research paper thumbnail of Assessing the Governance of Digital Contact Tracing in Response to COVID-19: Results of a Multi-National Study" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/99276702/Assessing_the_Governance_of_Digital_Contact_Tracing_in_Response_to_COVID_19_Results_of_a_Multi_National_Study">Assessing the Governance of Digital Contact Tracing in Response to COVID-19: Results of a Multi-National Study</a></div><div class="wp-workCard_item"><span>Journal of Law, Medicine &amp; Ethics</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">This paper describes the results of a multi-country survey of governance approaches for the use o...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">This paper describes the results of a multi-country survey of governance approaches for the use of digital contact tracing (DCT) in response to the COVID-19 pandemic. We argue that the countries in our survey represent two distinct models of DCT governance, both of which are flawed. The “data protection model” emphasizes privacy protections at the expense of public health benefit, while the “emergency response model” sacrifices transparency and accountability, prompting concerns about excessive governance surveillance. The ethical and effective use of DCT in the future requires a new governance approach that is better suited to this novel use of mobile phone data to promote public health.”</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="99276702"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="99276702"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 99276702; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=99276702]").text(description); $(".js-view-count[data-work-id=99276702]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 99276702; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='99276702']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 99276702, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=99276702]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":99276702,"title":"Assessing the Governance of Digital Contact Tracing in Response to COVID-19: Results of a Multi-National Study","translated_title":"","metadata":{"abstract":"This paper describes the results of a multi-country survey of governance approaches for the use of digital contact tracing (DCT) in response to the COVID-19 pandemic. We argue that the countries in our survey represent two distinct models of DCT governance, both of which are flawed. The “data protection model” emphasizes privacy protections at the expense of public health benefit, while the “emergency response model” sacrifices transparency and accountability, prompting concerns about excessive governance surveillance. The ethical and effective use of DCT in the future requires a new governance approach that is better suited to this novel use of mobile phone data to promote public health.”","publisher":"Cambridge University Press (CUP)","publication_name":"Journal of Law, Medicine \u0026amp; Ethics"},"translated_abstract":"This paper describes the results of a multi-country survey of governance approaches for the use of digital contact tracing (DCT) in response to the COVID-19 pandemic. We argue that the countries in our survey represent two distinct models of DCT governance, both of which are flawed. 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The ethical and effective use of DCT in the future requires a new governance approach that is better suited to this novel use of mobile phone data to promote public health.”","internal_url":"https://www.academia.edu/99276702/Assessing_the_Governance_of_Digital_Contact_Tracing_in_Response_to_COVID_19_Results_of_a_Multi_National_Study","translated_internal_url":"","created_at":"2023-03-29T09:18:19.487-07:00","preview_url":null,"current_user_can_edit":null,"current_user_is_owner":null,"owner_id":282307,"coauthors_can_edit":true,"document_type":"paper","co_author_tags":[],"downloadable_attachments":[],"slug":"Assessing_the_Governance_of_Digital_Contact_Tracing_in_Response_to_COVID_19_Results_of_a_Multi_National_Study","translated_slug":"","page_count":null,"language":"en","content_type":"Work","summary":"This paper describes the results of a multi-country survey of governance approaches for the use of digital contact tracing (DCT) in response to the COVID-19 pandemic. We argue that the countries in our survey represent two distinct models of DCT governance, both of which are flawed. The “data protection model” emphasizes privacy protections at the expense of public health benefit, while the “emergency response model” sacrifices transparency and accountability, prompting concerns about excessive governance surveillance. The ethical and effective use of DCT in the future requires a new governance approach that is better suited to this novel use of mobile phone data to promote public health.”","owner":{"id":282307,"first_name":"Alan","middle_initials":null,"last_name":"Regenberg","page_name":"AlanRegenberg","domain_name":"johnshopkins","created_at":"2010-11-17T00:56:40.962-08:00","display_name":"Alan Regenberg","url":"https://johnshopkins.academia.edu/AlanRegenberg"},"attachments":[],"research_interests":[{"id":534,"name":"Law","url":"https://www.academia.edu/Documents/in/Law"},{"id":906,"name":"Applied Ethics","url":"https://www.academia.edu/Documents/in/Applied_Ethics"}],"urls":[{"id":30158637,"url":"https://www.cambridge.org/core/services/aop-cambridge-core/content/view/S1073110523000207"}]}, dispatcherData: dispatcherData }); $(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="87101783"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/87101783/Why_it_is_important_to_study_human_monkey_embryonic_chimeras_in_a_dish"><img alt="Research paper thumbnail of Why it is important to study human–monkey embryonic chimeras in a dish" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/87101783/Why_it_is_important_to_study_human_monkey_embryonic_chimeras_in_a_dish">Why it is important to study human–monkey embryonic chimeras in a dish</a></div><div class="wp-workCard_item"><span>Nature Methods</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="87101783"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="87101783"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 87101783; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=87101783]").text(description); $(".js-view-count[data-work-id=87101783]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 87101783; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='87101783']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 87101783, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="82704508"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/82704508/Too_Many_Patients_A_Framework_to_Guide_Statewide_Allocation_of_Scarce_Mechanical_Ventilation_During_Disasters"><img alt="Research paper thumbnail of Too Many Patients…A Framework to Guide Statewide Allocation of Scarce Mechanical Ventilation During Disasters" class="work-thumbnail" src="https://attachments.academia-assets.com/88324992/thumbnails/1.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/82704508/Too_Many_Patients_A_Framework_to_Guide_Statewide_Allocation_of_Scarce_Mechanical_Ventilation_During_Disasters">Too Many Patients…A Framework to Guide Statewide Allocation of Scarce Mechanical Ventilation During Disasters</a></div><div class="wp-workCard_item"><span>Chest</span><span>, 2018</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">The threat of a catastrophic public health emergency causing life-threatening illness or injury o...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">The threat of a catastrophic public health emergency causing life-threatening illness or injury on a massive scale has prompted extensive federal, state, and local preparedness efforts. Modeling studies suggest that an influenza pandemic similar to that of 1918 would require ICU and mechanical ventilation capacity that is significantly greater than what is available. Several groups have published recommendations for allocating life-support measures during a public health emergency. Because there are multiple ethically permissible approaches to allocating scarce life-sustaining resources and because the public will bear the consequences of these decisions, knowledge of public perspectives and moral points of reference on these issues is critical. Here we describe a critical care disaster resource allocation framework developed following a statewide community engagement process in Maryland. It is intended to assist hospitals and public health agencies in their independent and coordinated response to an officially declared catastrophic health emergency in which demand for mechanical ventilators exceeds the capabilities of all surge response efforts and in which there has been an executive order to implement scarce resource allocation procedures. The framework, built on a basic scoring system with modifications for specific considerations, also creates an opportunity for the legal community to review existing laws and liability protections in light of a specific disaster response process.</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><a id="5ed34fdded9cfbe91d187e3488d2a20b" class="wp-workCard--action" rel="nofollow" data-click-track="profile-work-strip-download" data-download="{"attachment_id":88324992,"asset_id":82704508,"asset_type":"Work","button_location":"profile"}" href="https://www.academia.edu/attachments/88324992/download_file?st=MTczMzk3MzM5NSw4LjIyMi4yMDguMTQ2&s=profile"><span><i class="fa fa-arrow-down"></i></span><span>Download</span></a><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="82704508"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="82704508"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 82704508; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=82704508]").text(description); $(".js-view-count[data-work-id=82704508]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 82704508; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='82704508']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 82704508, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (true){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "5ed34fdded9cfbe91d187e3488d2a20b" } } $('.js-work-strip[data-work-id=82704508]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":82704508,"title":"Too Many Patients…A Framework to Guide Statewide Allocation of Scarce Mechanical Ventilation During Disasters","translated_title":"","metadata":{"publisher":"Elsevier BV","grobid_abstract":"The threat of a catastrophic public health emergency causing life-threatening illness or injury on a massive scale has prompted extensive federal, state, and local preparedness efforts. Modeling studies suggest that an influenza pandemic similar to that of 1918 would require ICU and mechanical ventilation capacity that is significantly greater than what is available. Several groups have published recommendations for allocating life-support measures during a public health emergency. Because there are multiple ethically permissible approaches to allocating scarce life-sustaining resources and because the public will bear the consequences of these decisions, knowledge of public perspectives and moral points of reference on these issues is critical. Here we describe a critical care disaster resource allocation framework developed following a statewide community engagement process in Maryland. It is intended to assist hospitals and public health agencies in their independent and coordinated response to an officially declared catastrophic health emergency in which demand for mechanical ventilators exceeds the capabilities of all surge response efforts and in which there has been an executive order to implement scarce resource allocation procedures. 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It is intended to assist hospitals and public health agencies in their independent and coordinated response to an officially declared catastrophic health emergency in which demand for mechanical ventilators exceeds the capabilities of all surge response efforts and in which there has been an executive order to implement scarce resource allocation procedures. 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="76112852"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/76112852/Bioethical_Considerations_in_Developing_a_Biorepository_for_the_Pneumonia_Etiology_Research_for_Child_Health_Project"><img alt="Research paper thumbnail of Bioethical Considerations in Developing a Biorepository for the Pneumonia Etiology Research for Child Health Project" class="work-thumbnail" src="https://attachments.academia-assets.com/83786465/thumbnails/1.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/76112852/Bioethical_Considerations_in_Developing_a_Biorepository_for_the_Pneumonia_Etiology_Research_for_Child_Health_Project">Bioethical Considerations in Developing a Biorepository for the Pneumonia Etiology Research for Child Health Project</a></div><div class="wp-workCard_item"><span>Clinical Infectious Diseases</span><span>, 2012</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">The Pneumonia Etiology Research for Child Health (PERCH) project has the potential to provide a h...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">The Pneumonia Etiology Research for Child Health (PERCH) project has the potential to provide a highly valuable resource of biospecimens that may be used to inform future studies on the causes of pneumonia. Designing a biorepository for this complex project was done in collaboration with a wide range of experts including bioethicists. In this paper, we describe the most significant ethical issues encountered related to the biorepository, focusing on its structure and informed consent. We also outline the proposed approach to the PERCH biorepository, which was designed to be sensitive to the ethical, practical, and cultural challenges inherent to the study. Through this process, we concluded that biorepository governance plans and strategies for managing informed consent should be implemented in a way to allow for careful study in order to better understand the attitudes of and impact on the stakeholders involved in the study.</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><a id="e44f1437473b13810ed7461c1c4c75dd" class="wp-workCard--action" rel="nofollow" data-click-track="profile-work-strip-download" data-download="{"attachment_id":83786465,"asset_id":76112852,"asset_type":"Work","button_location":"profile"}" href="https://www.academia.edu/attachments/83786465/download_file?st=MTczMzk3MzM5NSw4LjIyMi4yMDguMTQ2&s=profile"><span><i class="fa fa-arrow-down"></i></span><span>Download</span></a><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="76112852"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="76112852"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 76112852; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=76112852]").text(description); $(".js-view-count[data-work-id=76112852]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 76112852; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='76112852']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 76112852, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (true){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "e44f1437473b13810ed7461c1c4c75dd" } } $('.js-work-strip[data-work-id=76112852]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":76112852,"title":"Bioethical Considerations in Developing a Biorepository for the Pneumonia Etiology Research for Child Health Project","translated_title":"","metadata":{"publisher":"Oxford University Press (OUP)","grobid_abstract":"The Pneumonia Etiology Research for Child Health (PERCH) project has the potential to provide a highly valuable resource of biospecimens that may be used to inform future studies on the causes of pneumonia. 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="64299688"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/64299688/Toward_a_Theory_of_Moral_Status_Inclusive_of_Nonhuman_Animals"><img alt="Research paper thumbnail of Toward a Theory of Moral Status Inclusive of Nonhuman Animals" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/64299688/Toward_a_Theory_of_Moral_Status_Inclusive_of_Nonhuman_Animals">Toward a Theory of Moral Status Inclusive of Nonhuman Animals</a></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">This chapter argues for a need for a theory of moral status that can help to provide solutions to...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">This chapter argues for a need for a theory of moral status that can help to provide solutions to practical problems in public policy that take account of the interests of diverse nonhuman animals. To illustrate this need, the chapter briefly describes two contemporary problems, one in science policy and one in food and climate policy. The first section provides a sketch of a way to think about a tiered or hierarchical theory of moral status that could be fit for such work. The second section considers in some depth the problem of human–nonhuman chimeras. This example is used to illustrate how a hierarchical theory of moral status should prove helpful in framing policy responses to this problem.</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="64299688"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="64299688"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 64299688; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=64299688]").text(description); $(".js-view-count[data-work-id=64299688]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 64299688; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='64299688']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 64299688, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=64299688]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":64299688,"title":"Toward a Theory of Moral Status Inclusive of Nonhuman Animals","translated_title":"","metadata":{"abstract":"This chapter argues for a need for a theory of moral status that can help to provide solutions to practical problems in public policy that take account of the interests of diverse nonhuman animals. 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To illustrate this need, the chapter briefly describes two contemporary problems, one in science policy and one in food and climate policy. The first section provides a sketch of a way to think about a tiered or hierarchical theory of moral status that could be fit for such work. The second section considers in some depth the problem of human–nonhuman chimeras. This example is used to illustrate how a hierarchical theory of moral status should prove helpful in framing policy responses to this problem.","owner":{"id":282307,"first_name":"Alan","middle_initials":null,"last_name":"Regenberg","page_name":"AlanRegenberg","domain_name":"johnshopkins","created_at":"2010-11-17T00:56:40.962-08:00","display_name":"Alan Regenberg","url":"https://johnshopkins.academia.edu/AlanRegenberg"},"attachments":[],"research_interests":[],"urls":[]}, dispatcherData: dispatcherData }); $(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="64299419"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/64299419/A_two_cultures_phrasebook"><img alt="Research paper thumbnail of A "two cultures" phrasebook" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/64299419/A_two_cultures_phrasebook">A "two cultures" phrasebook</a></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="64299419"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="64299419"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 64299419; 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="60219807"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/60219807/Biologics_for_chronic_rhinosinusitis_with_nasal_polyps_Economics_and_ethics"><img alt="Research paper thumbnail of Biologics for chronic rhinosinusitis with nasal polyps: Economics and ethics" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/60219807/Biologics_for_chronic_rhinosinusitis_with_nasal_polyps_Economics_and_ethics">Biologics for chronic rhinosinusitis with nasal polyps: Economics and ethics</a></div><div class="wp-workCard_item"><span>International Forum of Allergy & Rhinology</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="60219807"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="60219807"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 60219807; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=60219807]").text(description); $(".js-view-count[data-work-id=60219807]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 60219807; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='60219807']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 60219807, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="48729771"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/48729771/Cell_based_interventions_for_neurologic_conditions_Ethical_challenges_for_early_human_trials"><img alt="Research paper thumbnail of Cell-based interventions for neurologic conditions: Ethical challenges for early human trials" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/48729771/Cell_based_interventions_for_neurologic_conditions_Ethical_challenges_for_early_human_trials">Cell-based interventions for neurologic conditions: Ethical challenges for early human trials</a></div><div class="wp-workCard_item"><span>Neurology</span><span>, 2008</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">Attempts to translate basic stem cell research into treatments for neurologic diseases and injury...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">Attempts to translate basic stem cell research into treatments for neurologic diseases and injury are well under way. With a clinical trial for one such treatment approved and in progress in the United States, and additional proposals under review, we must begin to address the ethical issues raised by such early forays into human clinical trials for cell-based interventions for neurologic conditions. An interdisciplinary working group composed of experts in neuroscience, cell biology, bioethics, law, and transplantation, along with leading disease researchers, was convened twice over 2 years to identify and deliberate on the scientific and ethical issues raised by the transition from preclinical to clinical research of cell-based interventions for neurologic conditions. While the relevant ethical issues are in many respects standard challenges of human subjects research, they are heightened in complexity by the novelty of the science, the focus on the CNS, and the political climate in which the science is proceeding. Distinctive challenges confronting US scientists, administrators, institutional review boards, stem cell research oversight committees, and others who will need to make decisions about work involving stem cells and their derivatives and evaluate the ethics of early human trials include evaluating the risks, safety, and benefits of these trials, determining and evaluating cell line provenance, and determining inclusion criteria, informed consent, and the ethics of conducting early human trials in the public spotlight. Further study and deliberation by stakeholders is required to move toward professional and institutional policies and practices governing this research.</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="48729771"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="48729771"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 48729771; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=48729771]").text(description); $(".js-view-count[data-work-id=48729771]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 48729771; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='48729771']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 48729771, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=48729771]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":48729771,"title":"Cell-based interventions for neurologic conditions: Ethical challenges for early human trials","translated_title":"","metadata":{"abstract":"Attempts to translate basic stem cell research into treatments for neurologic diseases and injury are well under way. With a clinical trial for one such treatment approved and in progress in the United States, and additional proposals under review, we must begin to address the ethical issues raised by such early forays into human clinical trials for cell-based interventions for neurologic conditions. An interdisciplinary working group composed of experts in neuroscience, cell biology, bioethics, law, and transplantation, along with leading disease researchers, was convened twice over 2 years to identify and deliberate on the scientific and ethical issues raised by the transition from preclinical to clinical research of cell-based interventions for neurologic conditions. While the relevant ethical issues are in many respects standard challenges of human subjects research, they are heightened in complexity by the novelty of the science, the focus on the CNS, and the political climate in which the science is proceeding. Distinctive challenges confronting US scientists, administrators, institutional review boards, stem cell research oversight committees, and others who will need to make decisions about work involving stem cells and their derivatives and evaluate the ethics of early human trials include evaluating the risks, safety, and benefits of these trials, determining and evaluating cell line provenance, and determining inclusion criteria, informed consent, and the ethics of conducting early human trials in the public spotlight. Further study and deliberation by stakeholders is required to move toward professional and institutional policies and practices governing this research.","publisher":"Ovid Technologies (Wolters Kluwer Health)","publication_date":{"day":null,"month":null,"year":2008,"errors":{}},"publication_name":"Neurology"},"translated_abstract":"Attempts to translate basic stem cell research into treatments for neurologic diseases and injury are well under way. With a clinical trial for one such treatment approved and in progress in the United States, and additional proposals under review, we must begin to address the ethical issues raised by such early forays into human clinical trials for cell-based interventions for neurologic conditions. An interdisciplinary working group composed of experts in neuroscience, cell biology, bioethics, law, and transplantation, along with leading disease researchers, was convened twice over 2 years to identify and deliberate on the scientific and ethical issues raised by the transition from preclinical to clinical research of cell-based interventions for neurologic conditions. While the relevant ethical issues are in many respects standard challenges of human subjects research, they are heightened in complexity by the novelty of the science, the focus on the CNS, and the political climate in which the science is proceeding. Distinctive challenges confronting US scientists, administrators, institutional review boards, stem cell research oversight committees, and others who will need to make decisions about work involving stem cells and their derivatives and evaluate the ethics of early human trials include evaluating the risks, safety, and benefits of these trials, determining and evaluating cell line provenance, and determining inclusion criteria, informed consent, and the ethics of conducting early human trials in the public spotlight. Further study and deliberation by stakeholders is required to move toward professional and institutional policies and practices governing this research.","internal_url":"https://www.academia.edu/48729771/Cell_based_interventions_for_neurologic_conditions_Ethical_challenges_for_early_human_trials","translated_internal_url":"","created_at":"2021-05-05T07:57:00.992-07:00","preview_url":null,"current_user_can_edit":null,"current_user_is_owner":null,"owner_id":282307,"coauthors_can_edit":true,"document_type":"paper","co_author_tags":[],"downloadable_attachments":[],"slug":"Cell_based_interventions_for_neurologic_conditions_Ethical_challenges_for_early_human_trials","translated_slug":"","page_count":null,"language":"en","content_type":"Work","summary":"Attempts to translate basic stem cell research into treatments for neurologic diseases and injury are well under way. With a clinical trial for one such treatment approved and in progress in the United States, and additional proposals under review, we must begin to address the ethical issues raised by such early forays into human clinical trials for cell-based interventions for neurologic conditions. An interdisciplinary working group composed of experts in neuroscience, cell biology, bioethics, law, and transplantation, along with leading disease researchers, was convened twice over 2 years to identify and deliberate on the scientific and ethical issues raised by the transition from preclinical to clinical research of cell-based interventions for neurologic conditions. While the relevant ethical issues are in many respects standard challenges of human subjects research, they are heightened in complexity by the novelty of the science, the focus on the CNS, and the political climate in which the science is proceeding. Distinctive challenges confronting US scientists, administrators, institutional review boards, stem cell research oversight committees, and others who will need to make decisions about work involving stem cells and their derivatives and evaluate the ethics of early human trials include evaluating the risks, safety, and benefits of these trials, determining and evaluating cell line provenance, and determining inclusion criteria, informed consent, and the ethics of conducting early human trials in the public spotlight. Further study and deliberation by stakeholders is required to move toward professional and institutional policies and practices governing this research.","owner":{"id":282307,"first_name":"Alan","middle_initials":null,"last_name":"Regenberg","page_name":"AlanRegenberg","domain_name":"johnshopkins","created_at":"2010-11-17T00:56:40.962-08:00","display_name":"Alan Regenberg","url":"https://johnshopkins.academia.edu/AlanRegenberg"},"attachments":[],"research_interests":[{"id":237,"name":"Cognitive Science","url":"https://www.academia.edu/Documents/in/Cognitive_Science"},{"id":623,"name":"Neurology","url":"https://www.academia.edu/Documents/in/Neurology"},{"id":4531,"name":"Clinical Trial","url":"https://www.academia.edu/Documents/in/Clinical_Trial"},{"id":8562,"name":"Informed Consent","url":"https://www.academia.edu/Documents/in/Informed_Consent"},{"id":9435,"name":"Medical Ethics","url":"https://www.academia.edu/Documents/in/Medical_Ethics"},{"id":13827,"name":"Cell Biology","url":"https://www.academia.edu/Documents/in/Cell_Biology"},{"id":57808,"name":"Cell line","url":"https://www.academia.edu/Documents/in/Cell_line"},{"id":66110,"name":"Clinical research","url":"https://www.academia.edu/Documents/in/Clinical_research"},{"id":66744,"name":"Biomedical Research","url":"https://www.academia.edu/Documents/in/Biomedical_Research"},{"id":174592,"name":"Embryonic Stem Cells","url":"https://www.academia.edu/Documents/in/Embryonic_Stem_Cells"},{"id":244814,"name":"Clinical Sciences","url":"https://www.academia.edu/Documents/in/Clinical_Sciences"},{"id":411275,"name":"Ethical Issues","url":"https://www.academia.edu/Documents/in/Ethical_Issues"},{"id":567981,"name":"Consumer Participation","url":"https://www.academia.edu/Documents/in/Consumer_Participation"},{"id":599219,"name":"Interdisciplinary Communication","url":"https://www.academia.edu/Documents/in/Interdisciplinary_Communication"},{"id":979686,"name":"Human Subjects","url":"https://www.academia.edu/Documents/in/Human_Subjects"},{"id":1423078,"name":"Nervous System Diseases","url":"https://www.academia.edu/Documents/in/Nervous_System_Diseases"},{"id":1765793,"name":"Brain Diseases","url":"https://www.academia.edu/Documents/in/Brain_Diseases"},{"id":2463778,"name":"Clinical Trials as Topic","url":"https://www.academia.edu/Documents/in/Clinical_Trials_as_Topic"}],"urls":[]}, dispatcherData: dispatcherData }); $(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="48246095"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/48246095/Influence_of_Community_and_Culture_in_the_Ethical_Allocation_of_Scarce_Medical_Resources_in_a_Pandemic_Situation_Deliberative_Democracy_Study"><img alt="Research paper thumbnail of Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/48246095/Influence_of_Community_and_Culture_in_the_Ethical_Allocation_of_Scarce_Medical_Resources_in_a_Pandemic_Situation_Deliberative_Democracy_Study">Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study</a></div><div class="wp-workCard_item"><span>Journal of Participatory Medicine</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">Background Stark gaps exist between projected health needs in a pandemic situation and the curren...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">Background Stark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. Existing pandemic ethics discussions have advocated to engage the public in scarcity dilemmas and attend the local contexts and cultural perspectives that shape responses to a global health threat. This public engagement study thus considers the role of community and culture in the ethical apportionment of scarce health resources, specifically ventilators, during an influenza pandemic. It builds upon a previous exploration of the values and preferences of Maryland residents regarding how a finite supply of mechanical ventilators ought to be allocated during a severe global outbreak of influenza. An important finding of this earlier research was that local history and place within the state engendered different ways of thinking about scarcity. Objective Given the intrastate variation in the themes expressed by Maryland particip...</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="48246095"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="48246095"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 48246095; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=48246095]").text(description); $(".js-view-count[data-work-id=48246095]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 48246095; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='48246095']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 48246095, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=48246095]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":48246095,"title":"Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study","translated_title":"","metadata":{"abstract":"Background Stark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="48246092"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/48246092/Similarities_and_differences_in_depression_among_black_and_white_nursing_home_residents"><img alt="Research paper thumbnail of Similarities and differences in depression among black and white nursing home residents" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/48246092/Similarities_and_differences_in_depression_among_black_and_white_nursing_home_residents">Similarities and differences in depression among black and white nursing home residents</a></div><div class="wp-workCard_item"><span>The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">The authors examined racial similarities and differences in depressive symptomatology, diagnosis,...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">The authors examined racial similarities and differences in depressive symptomatology, diagnosis, and the predictors of depression in four independent nursing homes, conducting analyses across all sites and separately for the nursing home with the greatest racial balance (NH4). All-site data indicated that white residents showed more depression than black residents. There were no racial differences in the depression diagnosis derived from a structured interview of DSM-III-R. At NH4, there were no statistically significant racial differences in any of the measures of depression. Across sites, functional disability was the strongest predictor of both Geriatric Depression Scale (GDS) and DSM-III-R diagnosis of depression in both blacks and whites. Cognitive impairment and use of antidepressants were predictive of medical chart diagnosis of depression across sites, but not of depression measured by GDS or DSM-III-R criteria. 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While Baker&amp;#x27;s draft document contributes to the important conversation about this process, there are significant issues associated with ...</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="48246091"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="48246091"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 48246091; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=48246091]").text(description); $(".js-view-count[data-work-id=48246091]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 48246091; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='48246091']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 48246091, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=48246091]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":48246091,"title":"Resisting the Tide of Professionalization: Valuing Diversity in Bioethics","translated_title":"","metadata":{"abstract":"argues that professional “codes are aggregative enterprises growing within fields in response to their historical experiences and needs,” and that “the field of bioethics has reached the point at which it has need to assert its integrity and its independence.” The drafting of professional codes and standards represents an important milestone in the ongoing professionalization of bioethics. 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While Baker\u0026amp;#x27;s draft document contributes to the important conversation about this process, there are significant issues associated with ...","owner":{"id":282307,"first_name":"Alan","middle_initials":null,"last_name":"Regenberg","page_name":"AlanRegenberg","domain_name":"johnshopkins","created_at":"2010-11-17T00:56:40.962-08:00","display_name":"Alan Regenberg","url":"https://johnshopkins.academia.edu/AlanRegenberg"},"attachments":[],"research_interests":[{"id":906,"name":"Applied Ethics","url":"https://www.academia.edu/Documents/in/Applied_Ethics"},{"id":40937,"name":"Professional Role Socialization","url":"https://www.academia.edu/Documents/in/Professional_Role_Socialization"},{"id":89250,"name":"Complementary Therapies","url":"https://www.academia.edu/Documents/in/Complementary_Therapies"},{"id":336324,"name":"Professional Autonomy","url":"https://www.academia.edu/Documents/in/Professional_Autonomy"},{"id":396310,"name":"Codes of Ethics","url":"https://www.academia.edu/Documents/in/Codes_of_Ethics"},{"id":410370,"name":"Public health systems and services research","url":"https://www.academia.edu/Documents/in/Public_health_systems_and_services_research-1"},{"id":489423,"name":"Morals","url":"https://www.academia.edu/Documents/in/Morals"},{"id":3269261,"name":"Professional Role","url":"https://www.academia.edu/Documents/in/Professional_Role"}],"urls":[]}, dispatcherData: dispatcherData }); $(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="48243078"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/48243078/Science_and_Social_Media"><img alt="Research paper thumbnail of Science and Social Media" class="work-thumbnail" src="https://attachments.academia-assets.com/66957394/thumbnails/1.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/48243078/Science_and_Social_Media">Science and Social Media</a></div><div class="wp-workCard_item"><span>STEM CELLS Translational Medicine</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">He Jiankui et al. conducted an experiment that resulted in the birth of the first human babies wi...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">He Jiankui et al. conducted an experiment that resulted in the birth of the first human babies with germline gene editing. Initial and predominant communications of their work occurred via social media and outside of the norms for reviewing, approving, and engaging around work in science. This case provides an opportunity to reflect on the evolving and increasing presence of social media in science, its strengths, weaknesses, and the potential to develop applications that improve how we review, approve, and engage around the work of science. Social media use in science presents significant challenges. The potential benefits of addressing these challenges and developing new social media tools include greater transparency, access, and engagement-and could nurture the public's trust.</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><a id="a5213262cedd2d8cd68d875b436893d1" class="wp-workCard--action" rel="nofollow" data-click-track="profile-work-strip-download" data-download="{"attachment_id":66957394,"asset_id":48243078,"asset_type":"Work","button_location":"profile"}" href="https://www.academia.edu/attachments/66957394/download_file?st=MTczMzk3MzM5NSw4LjIyMi4yMDguMTQ2&s=profile"><span><i class="fa fa-arrow-down"></i></span><span>Download</span></a><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="48243078"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="48243078"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 48243078; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=48243078]").text(description); $(".js-view-count[data-work-id=48243078]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 48243078; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='48243078']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 48243078, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (true){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "a5213262cedd2d8cd68d875b436893d1" } } $('.js-work-strip[data-work-id=48243078]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":48243078,"title":"Science and Social Media","translated_title":"","metadata":{"publisher":"Wiley","grobid_abstract":"He Jiankui et al. conducted an experiment that resulted in the birth of the first human babies with germline gene editing. 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="23005658"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/23005658/Outreach_and_Engagement_Evolving_Media_and_the_Public_Obligations_of_Stem_Cell_Science"><img alt="Research paper thumbnail of Outreach and Engagement: Evolving Media and the Public Obligations of Stem Cell Science" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/23005658/Outreach_and_Engagement_Evolving_Media_and_the_Public_Obligations_of_Stem_Cell_Science">Outreach and Engagement: Evolving Media and the Public Obligations of Stem Cell Science</a></div><div class="wp-workCard_item"><span>Current Stem Cell Reports</span><span>, 2015</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="23005658"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="23005658"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 23005658; 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> </div><div class="profile--tab_content_container js-tab-pane tab-pane" data-section-id="37580" id="papers"><div class="js-work-strip profile--work_container" data-work-id="123094375"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/123094375/Ethics_and_Potential_Opportunities_and_Risks_of_Corporate_Uses_of_Socioeconomic_Polygenic_Risk_Scores"><img alt="Research paper thumbnail of Ethics and Potential Opportunities and Risks of Corporate Uses of Socioeconomic Polygenic Risk Scores" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/123094375/Ethics_and_Potential_Opportunities_and_Risks_of_Corporate_Uses_of_Socioeconomic_Polygenic_Risk_Scores">Ethics and Potential Opportunities and Risks of Corporate Uses of Socioeconomic Polygenic Risk Scores</a></div><div class="wp-workCard_item"><span>Social Science Research Network</span><span>, Dec 31, 2023</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="123094375"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="123094375"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 123094375; 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="99276702"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/99276702/Assessing_the_Governance_of_Digital_Contact_Tracing_in_Response_to_COVID_19_Results_of_a_Multi_National_Study"><img alt="Research paper thumbnail of Assessing the Governance of Digital Contact Tracing in Response to COVID-19: Results of a Multi-National Study" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/99276702/Assessing_the_Governance_of_Digital_Contact_Tracing_in_Response_to_COVID_19_Results_of_a_Multi_National_Study">Assessing the Governance of Digital Contact Tracing in Response to COVID-19: Results of a Multi-National Study</a></div><div class="wp-workCard_item"><span>Journal of Law, Medicine &amp; Ethics</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">This paper describes the results of a multi-country survey of governance approaches for the use o...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">This paper describes the results of a multi-country survey of governance approaches for the use of digital contact tracing (DCT) in response to the COVID-19 pandemic. We argue that the countries in our survey represent two distinct models of DCT governance, both of which are flawed. The “data protection model” emphasizes privacy protections at the expense of public health benefit, while the “emergency response model” sacrifices transparency and accountability, prompting concerns about excessive governance surveillance. The ethical and effective use of DCT in the future requires a new governance approach that is better suited to this novel use of mobile phone data to promote public health.”</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="99276702"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="99276702"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 99276702; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=99276702]").text(description); $(".js-view-count[data-work-id=99276702]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 99276702; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='99276702']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 99276702, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=99276702]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":99276702,"title":"Assessing the Governance of Digital Contact Tracing in Response to COVID-19: Results of a Multi-National Study","translated_title":"","metadata":{"abstract":"This paper describes the results of a multi-country survey of governance approaches for the use of digital contact tracing (DCT) in response to the COVID-19 pandemic. 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We argue that the countries in our survey represent two distinct models of DCT governance, both of which are flawed. The “data protection model” emphasizes privacy protections at the expense of public health benefit, while the “emergency response model” sacrifices transparency and accountability, prompting concerns about excessive governance surveillance. 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window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=87101783]").text(description); $(".js-view-count[data-work-id=87101783]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 87101783; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='87101783']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 87101783, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="82704508"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/82704508/Too_Many_Patients_A_Framework_to_Guide_Statewide_Allocation_of_Scarce_Mechanical_Ventilation_During_Disasters"><img alt="Research paper thumbnail of Too Many Patients…A Framework to Guide Statewide Allocation of Scarce Mechanical Ventilation During Disasters" class="work-thumbnail" src="https://attachments.academia-assets.com/88324992/thumbnails/1.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/82704508/Too_Many_Patients_A_Framework_to_Guide_Statewide_Allocation_of_Scarce_Mechanical_Ventilation_During_Disasters">Too Many Patients…A Framework to Guide Statewide Allocation of Scarce Mechanical Ventilation During Disasters</a></div><div class="wp-workCard_item"><span>Chest</span><span>, 2018</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">The threat of a catastrophic public health emergency causing life-threatening illness or injury o...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">The threat of a catastrophic public health emergency causing life-threatening illness or injury on a massive scale has prompted extensive federal, state, and local preparedness efforts. Modeling studies suggest that an influenza pandemic similar to that of 1918 would require ICU and mechanical ventilation capacity that is significantly greater than what is available. Several groups have published recommendations for allocating life-support measures during a public health emergency. Because there are multiple ethically permissible approaches to allocating scarce life-sustaining resources and because the public will bear the consequences of these decisions, knowledge of public perspectives and moral points of reference on these issues is critical. Here we describe a critical care disaster resource allocation framework developed following a statewide community engagement process in Maryland. It is intended to assist hospitals and public health agencies in their independent and coordinated response to an officially declared catastrophic health emergency in which demand for mechanical ventilators exceeds the capabilities of all surge response efforts and in which there has been an executive order to implement scarce resource allocation procedures. The framework, built on a basic scoring system with modifications for specific considerations, also creates an opportunity for the legal community to review existing laws and liability protections in light of a specific disaster response process.</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><a id="5ed34fdded9cfbe91d187e3488d2a20b" class="wp-workCard--action" rel="nofollow" data-click-track="profile-work-strip-download" data-download="{"attachment_id":88324992,"asset_id":82704508,"asset_type":"Work","button_location":"profile"}" href="https://www.academia.edu/attachments/88324992/download_file?st=MTczMzk3MzM5NSw4LjIyMi4yMDguMTQ2&st=MTczMzk3MzM5NSw4LjIyMi4yMDguMTQ2&s=profile"><span><i class="fa fa-arrow-down"></i></span><span>Download</span></a><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="82704508"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="82704508"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 82704508; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=82704508]").text(description); $(".js-view-count[data-work-id=82704508]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 82704508; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='82704508']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 82704508, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (true){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "5ed34fdded9cfbe91d187e3488d2a20b" } } $('.js-work-strip[data-work-id=82704508]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":82704508,"title":"Too Many Patients…A Framework to Guide Statewide Allocation of Scarce Mechanical Ventilation During Disasters","translated_title":"","metadata":{"publisher":"Elsevier BV","grobid_abstract":"The threat of a catastrophic public health emergency causing life-threatening illness or injury on a massive scale has prompted extensive federal, state, and local preparedness efforts. 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It is intended to assist hospitals and public health agencies in their independent and coordinated response to an officially declared catastrophic health emergency in which demand for mechanical ventilators exceeds the capabilities of all surge response efforts and in which there has been an executive order to implement scarce resource allocation procedures. 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Modeling studies suggest that an influenza pandemic similar to that of 1918 would require ICU and mechanical ventilation capacity that is significantly greater than what is available. Several groups have published recommendations for allocating life-support measures during a public health emergency. Because there are multiple ethically permissible approaches to allocating scarce life-sustaining resources and because the public will bear the consequences of these decisions, knowledge of public perspectives and moral points of reference on these issues is critical. Here we describe a critical care disaster resource allocation framework developed following a statewide community engagement process in Maryland. 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Donovan, Thomas Douglas, Christopher Gyngell, John Har...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">To cite this article: Sarah Chan, Peter J. Donovan, Thomas Douglas, Christopher Gyngell, John Harris, Robin Lovell-Badge, Debra J. H. 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Any substantial or s...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. The publisher does not give any warranty express or implied or make any representation that the contents will be complete or accurate or up to date. The accuracy of any instructions, formulae, and drug doses should be independently verified with primary sources. 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="76112852"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/76112852/Bioethical_Considerations_in_Developing_a_Biorepository_for_the_Pneumonia_Etiology_Research_for_Child_Health_Project"><img alt="Research paper thumbnail of Bioethical Considerations in Developing a Biorepository for the Pneumonia Etiology Research for Child Health Project" class="work-thumbnail" src="https://attachments.academia-assets.com/83786465/thumbnails/1.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/76112852/Bioethical_Considerations_in_Developing_a_Biorepository_for_the_Pneumonia_Etiology_Research_for_Child_Health_Project">Bioethical Considerations in Developing a Biorepository for the Pneumonia Etiology Research for Child Health Project</a></div><div class="wp-workCard_item"><span>Clinical Infectious Diseases</span><span>, 2012</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">The Pneumonia Etiology Research for Child Health (PERCH) project has the potential to provide a h...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">The Pneumonia Etiology Research for Child Health (PERCH) project has the potential to provide a highly valuable resource of biospecimens that may be used to inform future studies on the causes of pneumonia. Designing a biorepository for this complex project was done in collaboration with a wide range of experts including bioethicists. In this paper, we describe the most significant ethical issues encountered related to the biorepository, focusing on its structure and informed consent. We also outline the proposed approach to the PERCH biorepository, which was designed to be sensitive to the ethical, practical, and cultural challenges inherent to the study. 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="64299688"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/64299688/Toward_a_Theory_of_Moral_Status_Inclusive_of_Nonhuman_Animals"><img alt="Research paper thumbnail of Toward a Theory of Moral Status Inclusive of Nonhuman Animals" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/64299688/Toward_a_Theory_of_Moral_Status_Inclusive_of_Nonhuman_Animals">Toward a Theory of Moral Status Inclusive of Nonhuman Animals</a></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">This chapter argues for a need for a theory of moral status that can help to provide solutions to...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">This chapter argues for a need for a theory of moral status that can help to provide solutions to practical problems in public policy that take account of the interests of diverse nonhuman animals. To illustrate this need, the chapter briefly describes two contemporary problems, one in science policy and one in food and climate policy. The first section provides a sketch of a way to think about a tiered or hierarchical theory of moral status that could be fit for such work. The second section considers in some depth the problem of human–nonhuman chimeras. This example is used to illustrate how a hierarchical theory of moral status should prove helpful in framing policy responses to this problem.</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="64299688"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="64299688"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 64299688; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=64299688]").text(description); $(".js-view-count[data-work-id=64299688]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 64299688; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='64299688']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 64299688, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=64299688]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":64299688,"title":"Toward a Theory of Moral Status Inclusive of Nonhuman Animals","translated_title":"","metadata":{"abstract":"This chapter argues for a need for a theory of moral status that can help to provide solutions to practical problems in public policy that take account of the interests of diverse nonhuman animals. 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To illustrate this need, the chapter briefly describes two contemporary problems, one in science policy and one in food and climate policy. The first section provides a sketch of a way to think about a tiered or hierarchical theory of moral status that could be fit for such work. The second section considers in some depth the problem of human–nonhuman chimeras. This example is used to illustrate how a hierarchical theory of moral status should prove helpful in framing policy responses to this problem.","owner":{"id":282307,"first_name":"Alan","middle_initials":null,"last_name":"Regenberg","page_name":"AlanRegenberg","domain_name":"johnshopkins","created_at":"2010-11-17T00:56:40.962-08:00","display_name":"Alan Regenberg","url":"https://johnshopkins.academia.edu/AlanRegenberg"},"attachments":[],"research_interests":[],"urls":[]}, dispatcherData: dispatcherData }); $(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="64299419"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/64299419/A_two_cultures_phrasebook"><img alt="Research paper thumbnail of A "two cultures" phrasebook" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/64299419/A_two_cultures_phrasebook">A "two cultures" phrasebook</a></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="64299419"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="64299419"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 64299419; 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="60219807"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/60219807/Biologics_for_chronic_rhinosinusitis_with_nasal_polyps_Economics_and_ethics"><img alt="Research paper thumbnail of Biologics for chronic rhinosinusitis with nasal polyps: Economics and ethics" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/60219807/Biologics_for_chronic_rhinosinusitis_with_nasal_polyps_Economics_and_ethics">Biologics for chronic rhinosinusitis with nasal polyps: Economics and ethics</a></div><div class="wp-workCard_item"><span>International Forum of Allergy & Rhinology</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="60219807"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="60219807"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 60219807; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=60219807]").text(description); $(".js-view-count[data-work-id=60219807]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 60219807; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='60219807']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 60219807, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="48729771"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/48729771/Cell_based_interventions_for_neurologic_conditions_Ethical_challenges_for_early_human_trials"><img alt="Research paper thumbnail of Cell-based interventions for neurologic conditions: Ethical challenges for early human trials" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/48729771/Cell_based_interventions_for_neurologic_conditions_Ethical_challenges_for_early_human_trials">Cell-based interventions for neurologic conditions: Ethical challenges for early human trials</a></div><div class="wp-workCard_item"><span>Neurology</span><span>, 2008</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">Attempts to translate basic stem cell research into treatments for neurologic diseases and injury...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">Attempts to translate basic stem cell research into treatments for neurologic diseases and injury are well under way. With a clinical trial for one such treatment approved and in progress in the United States, and additional proposals under review, we must begin to address the ethical issues raised by such early forays into human clinical trials for cell-based interventions for neurologic conditions. An interdisciplinary working group composed of experts in neuroscience, cell biology, bioethics, law, and transplantation, along with leading disease researchers, was convened twice over 2 years to identify and deliberate on the scientific and ethical issues raised by the transition from preclinical to clinical research of cell-based interventions for neurologic conditions. While the relevant ethical issues are in many respects standard challenges of human subjects research, they are heightened in complexity by the novelty of the science, the focus on the CNS, and the political climate in which the science is proceeding. Distinctive challenges confronting US scientists, administrators, institutional review boards, stem cell research oversight committees, and others who will need to make decisions about work involving stem cells and their derivatives and evaluate the ethics of early human trials include evaluating the risks, safety, and benefits of these trials, determining and evaluating cell line provenance, and determining inclusion criteria, informed consent, and the ethics of conducting early human trials in the public spotlight. Further study and deliberation by stakeholders is required to move toward professional and institutional policies and practices governing this research.</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="48729771"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="48729771"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 48729771; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=48729771]").text(description); $(".js-view-count[data-work-id=48729771]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 48729771; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='48729771']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 48729771, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=48729771]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":48729771,"title":"Cell-based interventions for neurologic conditions: Ethical challenges for early human trials","translated_title":"","metadata":{"abstract":"Attempts to translate basic stem cell research into treatments for neurologic diseases and injury are well under way. With a clinical trial for one such treatment approved and in progress in the United States, and additional proposals under review, we must begin to address the ethical issues raised by such early forays into human clinical trials for cell-based interventions for neurologic conditions. An interdisciplinary working group composed of experts in neuroscience, cell biology, bioethics, law, and transplantation, along with leading disease researchers, was convened twice over 2 years to identify and deliberate on the scientific and ethical issues raised by the transition from preclinical to clinical research of cell-based interventions for neurologic conditions. While the relevant ethical issues are in many respects standard challenges of human subjects research, they are heightened in complexity by the novelty of the science, the focus on the CNS, and the political climate in which the science is proceeding. Distinctive challenges confronting US scientists, administrators, institutional review boards, stem cell research oversight committees, and others who will need to make decisions about work involving stem cells and their derivatives and evaluate the ethics of early human trials include evaluating the risks, safety, and benefits of these trials, determining and evaluating cell line provenance, and determining inclusion criteria, informed consent, and the ethics of conducting early human trials in the public spotlight. Further study and deliberation by stakeholders is required to move toward professional and institutional policies and practices governing this research.","publisher":"Ovid Technologies (Wolters Kluwer Health)","publication_date":{"day":null,"month":null,"year":2008,"errors":{}},"publication_name":"Neurology"},"translated_abstract":"Attempts to translate basic stem cell research into treatments for neurologic diseases and injury are well under way. With a clinical trial for one such treatment approved and in progress in the United States, and additional proposals under review, we must begin to address the ethical issues raised by such early forays into human clinical trials for cell-based interventions for neurologic conditions. An interdisciplinary working group composed of experts in neuroscience, cell biology, bioethics, law, and transplantation, along with leading disease researchers, was convened twice over 2 years to identify and deliberate on the scientific and ethical issues raised by the transition from preclinical to clinical research of cell-based interventions for neurologic conditions. While the relevant ethical issues are in many respects standard challenges of human subjects research, they are heightened in complexity by the novelty of the science, the focus on the CNS, and the political climate in which the science is proceeding. Distinctive challenges confronting US scientists, administrators, institutional review boards, stem cell research oversight committees, and others who will need to make decisions about work involving stem cells and their derivatives and evaluate the ethics of early human trials include evaluating the risks, safety, and benefits of these trials, determining and evaluating cell line provenance, and determining inclusion criteria, informed consent, and the ethics of conducting early human trials in the public spotlight. Further study and deliberation by stakeholders is required to move toward professional and institutional policies and practices governing this research.","internal_url":"https://www.academia.edu/48729771/Cell_based_interventions_for_neurologic_conditions_Ethical_challenges_for_early_human_trials","translated_internal_url":"","created_at":"2021-05-05T07:57:00.992-07:00","preview_url":null,"current_user_can_edit":null,"current_user_is_owner":null,"owner_id":282307,"coauthors_can_edit":true,"document_type":"paper","co_author_tags":[],"downloadable_attachments":[],"slug":"Cell_based_interventions_for_neurologic_conditions_Ethical_challenges_for_early_human_trials","translated_slug":"","page_count":null,"language":"en","content_type":"Work","summary":"Attempts to translate basic stem cell research into treatments for neurologic diseases and injury are well under way. With a clinical trial for one such treatment approved and in progress in the United States, and additional proposals under review, we must begin to address the ethical issues raised by such early forays into human clinical trials for cell-based interventions for neurologic conditions. An interdisciplinary working group composed of experts in neuroscience, cell biology, bioethics, law, and transplantation, along with leading disease researchers, was convened twice over 2 years to identify and deliberate on the scientific and ethical issues raised by the transition from preclinical to clinical research of cell-based interventions for neurologic conditions. While the relevant ethical issues are in many respects standard challenges of human subjects research, they are heightened in complexity by the novelty of the science, the focus on the CNS, and the political climate in which the science is proceeding. Distinctive challenges confronting US scientists, administrators, institutional review boards, stem cell research oversight committees, and others who will need to make decisions about work involving stem cells and their derivatives and evaluate the ethics of early human trials include evaluating the risks, safety, and benefits of these trials, determining and evaluating cell line provenance, and determining inclusion criteria, informed consent, and the ethics of conducting early human trials in the public spotlight. Further study and deliberation by stakeholders is required to move toward professional and institutional policies and practices governing this research.","owner":{"id":282307,"first_name":"Alan","middle_initials":null,"last_name":"Regenberg","page_name":"AlanRegenberg","domain_name":"johnshopkins","created_at":"2010-11-17T00:56:40.962-08:00","display_name":"Alan Regenberg","url":"https://johnshopkins.academia.edu/AlanRegenberg"},"attachments":[],"research_interests":[{"id":237,"name":"Cognitive Science","url":"https://www.academia.edu/Documents/in/Cognitive_Science"},{"id":623,"name":"Neurology","url":"https://www.academia.edu/Documents/in/Neurology"},{"id":4531,"name":"Clinical Trial","url":"https://www.academia.edu/Documents/in/Clinical_Trial"},{"id":8562,"name":"Informed Consent","url":"https://www.academia.edu/Documents/in/Informed_Consent"},{"id":9435,"name":"Medical Ethics","url":"https://www.academia.edu/Documents/in/Medical_Ethics"},{"id":13827,"name":"Cell Biology","url":"https://www.academia.edu/Documents/in/Cell_Biology"},{"id":57808,"name":"Cell line","url":"https://www.academia.edu/Documents/in/Cell_line"},{"id":66110,"name":"Clinical research","url":"https://www.academia.edu/Documents/in/Clinical_research"},{"id":66744,"name":"Biomedical Research","url":"https://www.academia.edu/Documents/in/Biomedical_Research"},{"id":174592,"name":"Embryonic Stem Cells","url":"https://www.academia.edu/Documents/in/Embryonic_Stem_Cells"},{"id":244814,"name":"Clinical Sciences","url":"https://www.academia.edu/Documents/in/Clinical_Sciences"},{"id":411275,"name":"Ethical Issues","url":"https://www.academia.edu/Documents/in/Ethical_Issues"},{"id":567981,"name":"Consumer Participation","url":"https://www.academia.edu/Documents/in/Consumer_Participation"},{"id":599219,"name":"Interdisciplinary Communication","url":"https://www.academia.edu/Documents/in/Interdisciplinary_Communication"},{"id":979686,"name":"Human Subjects","url":"https://www.academia.edu/Documents/in/Human_Subjects"},{"id":1423078,"name":"Nervous System Diseases","url":"https://www.academia.edu/Documents/in/Nervous_System_Diseases"},{"id":1765793,"name":"Brain Diseases","url":"https://www.academia.edu/Documents/in/Brain_Diseases"},{"id":2463778,"name":"Clinical Trials as Topic","url":"https://www.academia.edu/Documents/in/Clinical_Trials_as_Topic"}],"urls":[]}, dispatcherData: dispatcherData }); $(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="48246095"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/48246095/Influence_of_Community_and_Culture_in_the_Ethical_Allocation_of_Scarce_Medical_Resources_in_a_Pandemic_Situation_Deliberative_Democracy_Study"><img alt="Research paper thumbnail of Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/48246095/Influence_of_Community_and_Culture_in_the_Ethical_Allocation_of_Scarce_Medical_Resources_in_a_Pandemic_Situation_Deliberative_Democracy_Study">Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study</a></div><div class="wp-workCard_item"><span>Journal of Participatory Medicine</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">Background Stark gaps exist between projected health needs in a pandemic situation and the curren...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">Background Stark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. Existing pandemic ethics discussions have advocated to engage the public in scarcity dilemmas and attend the local contexts and cultural perspectives that shape responses to a global health threat. This public engagement study thus considers the role of community and culture in the ethical apportionment of scarce health resources, specifically ventilators, during an influenza pandemic. It builds upon a previous exploration of the values and preferences of Maryland residents regarding how a finite supply of mechanical ventilators ought to be allocated during a severe global outbreak of influenza. An important finding of this earlier research was that local history and place within the state engendered different ways of thinking about scarcity. Objective Given the intrastate variation in the themes expressed by Maryland particip...</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="48246095"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="48246095"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 48246095; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=48246095]").text(description); $(".js-view-count[data-work-id=48246095]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 48246095; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='48246095']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 48246095, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=48246095]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":48246095,"title":"Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study","translated_title":"","metadata":{"abstract":"Background Stark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. 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$(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="48246092"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/48246092/Similarities_and_differences_in_depression_among_black_and_white_nursing_home_residents"><img alt="Research paper thumbnail of Similarities and differences in depression among black and white nursing home residents" class="work-thumbnail" src="https://a.academia-assets.com/images/blank-paper.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/48246092/Similarities_and_differences_in_depression_among_black_and_white_nursing_home_residents">Similarities and differences in depression among black and white nursing home residents</a></div><div class="wp-workCard_item"><span>The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">The authors examined racial similarities and differences in depressive symptomatology, diagnosis,...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">The authors examined racial similarities and differences in depressive symptomatology, diagnosis, and the predictors of depression in four independent nursing homes, conducting analyses across all sites and separately for the nursing home with the greatest racial balance (NH4). All-site data indicated that white residents showed more depression than black residents. There were no racial differences in the depression diagnosis derived from a structured interview of DSM-III-R. At NH4, there were no statistically significant racial differences in any of the measures of depression. Across sites, functional disability was the strongest predictor of both Geriatric Depression Scale (GDS) and DSM-III-R diagnosis of depression in both blacks and whites. Cognitive impairment and use of antidepressants were predictive of medical chart diagnosis of depression across sites, but not of depression measured by GDS or DSM-III-R criteria. 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While Baker&amp;#x27;s draft document contributes to the important conversation about this process, there are significant issues associated with ...</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="48246091"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="48246091"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 48246091; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=48246091]").text(description); $(".js-view-count[data-work-id=48246091]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 48246091; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='48246091']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 48246091, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (false){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "-1" } } $('.js-work-strip[data-work-id=48246091]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":48246091,"title":"Resisting the Tide of Professionalization: Valuing Diversity in Bioethics","translated_title":"","metadata":{"abstract":"argues that professional “codes are aggregative enterprises growing within fields in response to their historical experiences and needs,” and that “the field of bioethics has reached the point at which it has need to assert its integrity and its independence.” The drafting of professional codes and standards represents an important milestone in the ongoing professionalization of bioethics. 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While Baker\u0026amp;#x27;s draft document contributes to the important conversation about this process, there are significant issues associated with ...","owner":{"id":282307,"first_name":"Alan","middle_initials":null,"last_name":"Regenberg","page_name":"AlanRegenberg","domain_name":"johnshopkins","created_at":"2010-11-17T00:56:40.962-08:00","display_name":"Alan Regenberg","url":"https://johnshopkins.academia.edu/AlanRegenberg"},"attachments":[],"research_interests":[{"id":906,"name":"Applied Ethics","url":"https://www.academia.edu/Documents/in/Applied_Ethics"},{"id":40937,"name":"Professional Role Socialization","url":"https://www.academia.edu/Documents/in/Professional_Role_Socialization"},{"id":89250,"name":"Complementary Therapies","url":"https://www.academia.edu/Documents/in/Complementary_Therapies"},{"id":336324,"name":"Professional Autonomy","url":"https://www.academia.edu/Documents/in/Professional_Autonomy"},{"id":396310,"name":"Codes of Ethics","url":"https://www.academia.edu/Documents/in/Codes_of_Ethics"},{"id":410370,"name":"Public health systems and services research","url":"https://www.academia.edu/Documents/in/Public_health_systems_and_services_research-1"},{"id":489423,"name":"Morals","url":"https://www.academia.edu/Documents/in/Morals"},{"id":3269261,"name":"Professional Role","url":"https://www.academia.edu/Documents/in/Professional_Role"}],"urls":[]}, dispatcherData: dispatcherData }); $(this).data('initialized', true); } }); $a.trackClickSource(".js-work-strip-work-link", "profile_work_strip") }); </script> <div class="js-work-strip profile--work_container" data-work-id="48243078"><div class="profile--work_thumbnail hidden-xs"><a class="js-work-strip-work-link" data-click-track="profile-work-strip-thumbnail" href="https://www.academia.edu/48243078/Science_and_Social_Media"><img alt="Research paper thumbnail of Science and Social Media" class="work-thumbnail" src="https://attachments.academia-assets.com/66957394/thumbnails/1.jpg" /></a></div><div class="wp-workCard wp-workCard_itemContainer"><div class="wp-workCard_item wp-workCard--title"><a class="js-work-strip-work-link text-gray-darker" data-click-track="profile-work-strip-title" href="https://www.academia.edu/48243078/Science_and_Social_Media">Science and Social Media</a></div><div class="wp-workCard_item"><span>STEM CELLS Translational Medicine</span></div><div class="wp-workCard_item"><span class="js-work-more-abstract-truncated">He Jiankui et al. conducted an experiment that resulted in the birth of the first human babies wi...</span><a class="js-work-more-abstract" data-broccoli-component="work_strip.more_abstract" data-click-track="profile-work-strip-more-abstract" href="javascript:;"><span> more </span><span><i class="fa fa-caret-down"></i></span></a><span class="js-work-more-abstract-untruncated hidden">He Jiankui et al. conducted an experiment that resulted in the birth of the first human babies with germline gene editing. Initial and predominant communications of their work occurred via social media and outside of the norms for reviewing, approving, and engaging around work in science. This case provides an opportunity to reflect on the evolving and increasing presence of social media in science, its strengths, weaknesses, and the potential to develop applications that improve how we review, approve, and engage around the work of science. Social media use in science presents significant challenges. The potential benefits of addressing these challenges and developing new social media tools include greater transparency, access, and engagement-and could nurture the public's trust.</span></div><div class="wp-workCard_item wp-workCard--actions"><span class="work-strip-bookmark-button-container"></span><a id="a5213262cedd2d8cd68d875b436893d1" class="wp-workCard--action" rel="nofollow" data-click-track="profile-work-strip-download" data-download="{"attachment_id":66957394,"asset_id":48243078,"asset_type":"Work","button_location":"profile"}" href="https://www.academia.edu/attachments/66957394/download_file?st=MTczMzk3MzM5NSw4LjIyMi4yMDguMTQ2&st=MTczMzk3MzM5NSw4LjIyMi4yMDguMTQ2&s=profile"><span><i class="fa fa-arrow-down"></i></span><span>Download</span></a><span class="wp-workCard--action visible-if-viewed-by-owner inline-block" style="display: none;"><span class="js-profile-work-strip-edit-button-wrapper profile-work-strip-edit-button-wrapper" data-work-id="48243078"><a class="js-profile-work-strip-edit-button" tabindex="0"><span><i class="fa fa-pencil"></i></span><span>Edit</span></a></span></span><span id="work-strip-rankings-button-container"></span></div><div class="wp-workCard_item wp-workCard--stats"><span><span><span class="js-view-count view-count u-mr2x" data-work-id="48243078"><i class="fa fa-spinner fa-spin"></i></span><script>$(function () { var workId = 48243078; window.Academia.workViewCountsFetcher.queue(workId, function (count) { var description = window.$h.commaizeInt(count) + " " + window.$h.pluralize(count, 'View'); $(".js-view-count[data-work-id=48243078]").text(description); $(".js-view-count[data-work-id=48243078]").attr('title', description).tooltip(); }); });</script></span></span><span><span class="percentile-widget hidden"><span class="u-mr2x work-percentile"></span></span><script>$(function () { var workId = 48243078; window.Academia.workPercentilesFetcher.queue(workId, function (percentileText) { var container = $(".js-work-strip[data-work-id='48243078']"); container.find('.work-percentile').text(percentileText.charAt(0).toUpperCase() + percentileText.slice(1)); container.find('.percentile-widget').show(); container.find('.percentile-widget').removeClass('hidden'); }); });</script></span><span><script>$(function() { new Works.PaperRankView({ workId: 48243078, container: "", }); });</script></span></div><div id="work-strip-premium-row-container"></div></div></div><script> require.config({ waitSeconds: 90 })(["https://a.academia-assets.com/assets/wow_profile-f77ea15d77ce96025a6048a514272ad8becbad23c641fc2b3bd6e24ca6ff1932.js","https://a.academia-assets.com/assets/work_edit-ad038b8c047c1a8d4fa01b402d530ff93c45fee2137a149a4a5398bc8ad67560.js"], function() { // from javascript_helper.rb var dispatcherData = {} if (true){ window.WowProfile.dispatcher = window.WowProfile.dispatcher || _.clone(Backbone.Events); dispatcherData = { dispatcher: window.WowProfile.dispatcher, downloadLinkId: "a5213262cedd2d8cd68d875b436893d1" } } $('.js-work-strip[data-work-id=48243078]').each(function() { if (!$(this).data('initialized')) { new WowProfile.WorkStripView({ el: this, workJSON: {"id":48243078,"title":"Science and Social Media","translated_title":"","metadata":{"publisher":"Wiley","grobid_abstract":"He Jiankui et al. conducted an experiment that resulted in the birth of the first human babies with germline gene editing. 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