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The significance of inclusion in clinical trials and medical research databases
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This blog article addresses the significance of the inclusion of minority populations and different ethnic groups in clinical trials and health and medical research datasets. "> <meta name="dc.relation" content="https://techpolicy.org.il/he/blog/מבט-השוואתי-על-מודלים-של-הגנת-הפרטיות-2/"> <meta name="dc.source" content="https://techpolicy.org.il/he/"> <meta name="dc.language" content="he_IL"> <meta name="description" content="Despite Caucasians of European descent making up barely 16% of the world's population, 78% of the genetic and genomic information available today originates from this population. This blog article addresses the significance of the inclusion of minority populations and different ethnic groups in clinical trials and health and medical research datasets. 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class="wp-block-image size-large is-style-default"><img fetchpriority="high" decoding="async" width="1024" height="512" src="https://techpolicy.org.il/wp-content/uploads/2022/01/WEBINAR-SERIES-Comparative-Look-at-Models-of-Privacy-Protection-BANNER-1024x512.jpg" alt="WEBINAR SERIES BANNER" class="wp-image-4133" srcset="https://techpolicy.org.il/wp-content/uploads/2022/01/WEBINAR-SERIES-Comparative-Look-at-Models-of-Privacy-Protection-BANNER-1024x512.jpg 1024w, https://techpolicy.org.il/wp-content/uploads/2022/01/WEBINAR-SERIES-Comparative-Look-at-Models-of-Privacy-Protection-BANNER-300x150.jpg 300w, https://techpolicy.org.il/wp-content/uploads/2022/01/WEBINAR-SERIES-Comparative-Look-at-Models-of-Privacy-Protection-BANNER-768x384.jpg 768w, https://techpolicy.org.il/wp-content/uploads/2022/01/WEBINAR-SERIES-Comparative-Look-at-Models-of-Privacy-Protection-BANNER-1536x768.jpg 1536w, https://techpolicy.org.il/wp-content/uploads/2022/01/WEBINAR-SERIES-Comparative-Look-at-Models-of-Privacy-Protection-BANNER-2048x1024.jpg 2048w, https://techpolicy.org.il/wp-content/uploads/2022/01/WEBINAR-SERIES-Comparative-Look-at-Models-of-Privacy-Protection-BANNER-18x9.jpg 18w" sizes="(max-width: 1024px) 100vw, 1024px" /></figure> <p class="has-text-align-right"><strong><u>מבט השוואתי על מודלים של הגנת הפרטיות – לקראת תיקוני החוק בישראל</u></strong></p> <p class="has-text-align-right"><strong>סיכום ותובנות מהמפגש הראשון בנושא: בסיסים חוקיים לעיבוד מידע</strong></p> <p class="has-text-align-right"><strong>רקע</strong></p> <p class="has-text-align-right">לאחרונה פרסמה ממשלת ישראל <a href="https://bit.ly/339I68o">הצעת חוק לתיקון חוק הגנת הפרטיות (הצעת חוק הגנת הפרטיות (תיקון 14), התשע”א-2021</a>). תיקון זה, מהווה תיקון משמעותי ראשון בחוק מזה שנים רבות. התיקון המוצע מתבסס על הצעות שהומלצו בשנים 2007 ו-2011. בנוסף משרד המשפטים הצהיר כי הוא שוקד בימים אלה על הצעת חוק נוספת בתחום הפרטיות, מהותית ומקיפה יותר.</p> <p class="has-text-align-right"><em>להלן </em><a href="https://bit.ly/3bUvsLA"><em>קישור</em></a><em> לסקירה על עיקרי התיקון בהצעת החוק שערך המכון.</em></p> <p class="has-text-align-right">אגב הדיון בהצעת החוק, המכון הישראלי למדיניות טכנולוגיה בחר לארגן סדרה של מפגשים שמטרתם להפגיש את העוסקים בתחום עם מומחים בעלי שם, שירחיבו את נקודת המבט להסדרים הקיימים במדינות השונות, בכוונה להעשיר את הדיון בנושא גם בישראל.</p> <p class="has-text-align-right">המפגש הראשון התקיים ב-9 בפברואר 2022 (בזום) ועסק בנושא: “בסיסים חוקיים לעיבוד מידע” (להלן <a href="https://techpolicy.org.il/he/events/video-gallery/" data-type="URL" data-id="https://techpolicy.org.il/events/video-gallery/" target="_blank" rel="noreferrer noopener">קישור </a>להקלטת המפגש).</p> <p class="has-text-align-right">במפגש השתתפו הדוברים הבאים:</p> <ul class="wp-block-list"><li><a href="https://techpolicy.org.il/he/person/limor-shmerling-magazanik/">עו”ד לימור שמרלינג מגזניק</a>, מנהלת המכון הישראלי למדיניות טכנולוגיה.</li><li><a href="https://techpolicy.org.il/wp-content/uploads/2022/01/Dr.-Yaacov-Lozowick.pdf">דר’ יעקב לזוביק</a>, היסטוריון, גנז המדינה לשעבר ומרצה באוניברסיטת בר אילן.</li><li>דר’ גבריאלה זנפיר-פורטונה, סגנית נשיאה לפרטיות גלובאלית, הפורום לעתיד הפרטיות (FPF).</li><li>דר’ קלריס ג’ירו, מנהלת סניף אסיה-פסיפיק, הפורום לעתיד הפרטיות (FPF).</li><li><a href="https://www.linkedin.com/in/brunobioni/">דר’ ברונו ביוני</a>, מייסד-מנהל פרטיות מידע, ברזיל (Data Privacy, Brazil).</li></ul> <p>עורכת הסדרה: <a href="https://techpolicy.org.il/he/person/rivki-dvash/">עו״ד רבקי דב״ש</a>, עמיתה בכירה, המכון הישראלי למדיניות טכנולוגיה.</p> <p class="has-text-align-right"><strong>תובנות מרכזיות</strong></p> <ul class="wp-block-list"><li>מטרת חוקי הגנת המידע האישי אינם לאסור לגמרי את עיבוד המידע האישי, אלא לבסס אמצעי הגנה לעיבוד נתונים אישיים, כך שייעשה בהם שימוש באופן המכבד את זכויותיהם וחירויותיהם של יחידים.</li><li>בבסיסים החוקיים לעיבוד מידע בתקנות האיחוד האירופי (GDPR), אין היררכיה ועדיפות לעוגן אחד על פני השני.</li><li>יש חשיבות להוספת עוגנים נוספים לעיבוד מידע, ולהבהרה של הרגולטורים בדבר פרשנותם.</li><li>בפרקטיקה, בשל השונות בין המדינות השונות, עסקים משתדלים להתבסס על הסכמה כעוגן מרכזי משותף.</li><li>גם אם יש בעיות בנוגע להסכמה (האם ניתנת מרצון, עד כמה ההסכמה מבוססת הבנה וכו’), עדיין נדרש לחזק גם את העוגן הזה – תוך חיזוק השקיפות המותאמת למשתמש.</li><li>כל מערכת משפטית העוסקת בסוגיות המכריעות הללו של הגנה על נתונים כיום, חייבת לשקול את ההשפעות של התקדמות הזמן. מוצע שהסדר הגנת מידע אישי עכשווי ועדכני, יתן את הדעת על חלוף הזמן כקריטריון שמפחית את האינטרס להגנת המידע האישי, ומחזק את האינטרס בהנגשת המידע למחקר וארכיבאות לטובת הציבור.</li></ul> <p class="has-text-align-right">לקריאת סיכום עיקרי הדברים (בעברית) – <a href="https://techpolicy.org.il/wp-content/uploads/2022/02/%D7%A1%D7%99%D7%9B%D7%95%D7%9D-%D7%95%D7%AA%D7%95%D7%91%D7%A0%D7%95%D7%AA-%D7%9E%D7%94%D7%95%D7%95%D7%91%D7%99%D7%A0%D7%A8-%D7%94%D7%A8%D7%90%D7%A9%D7%95%D7%9F.pdf">כאן</a>.</p> <p class="has-text-align-right">לקריאת מאמרו של ד”ר ברונו ביוני מדוברי המפגש הראשון לחצו <a href="https://www.observatorioprivacidade.com.br/wp-content/uploads/2021/05/LI-under-LGPD_Data-Privacy-Brasil-Research-Association.pdf" data-type="URL" data-id="https://www.observatorioprivacidade.com.br/wp-content/uploads/2021/05/LI-under-LGPD_Data-Privacy-Brasil-Research-Association.pdf">כאן</a>. </p> <p>Research conducted by Bruno Ricardo Bioni, Mariana Rielli & Marina Kitayama about <strong>“Legitimate Interests Under The Brazilian Data Protection Law: General framework and concrete examples” </strong><a rel="noreferrer noopener" href="https://clicks.eventbrite.com/f/a/x1xxgY4VPYIZ694k1zaN9g~~/AAQxAQA~/RgRj3P4kP0SAaHR0cHM6Ly93d3cub2JzZXJ2YXRvcmlvcHJpdmFjaWRhZGUuY29tLmJyL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDIxLzA1L0xJLXVuZGVyLUxHUERfRGF0YS1Qcml2YWN5LUJyYXNpbC1SZXNlYXJjaC1Bc3NvY2lhdGlvbi5wZGZXA3NwY0IKYfmkyvthgYNqIVIYbWljaGFsQHRlY2hwb2xpY3kub3JnLmlsWAQAAAAA" target="_blank">כאן<strong>.</strong></a></p> 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class="single-footer__date"> <span>Published: 2022-02-20</span> <span>Last Updated: 2022-03-28</span> </div> <div class="single-footer__tags post-tags"> תגיות: <a href="https://techpolicy.org.il/he/tag/consent/" rel="tag">הסכמה</a>, <a href="https://techpolicy.org.il/he/tag/privacy/" rel="tag">פרטיות</a>, <a href="https://techpolicy.org.il/he/tag/privacy-protection-law/" rel="tag">חוק הגנת הפרטיות</a>, <a href="https://techpolicy.org.il/he/tag/webinar/" rel="tag">וובינר</a> </div> </div> </div> <div class="sidebar"> <h2>חיפוש</h2> <div style='display: none;'><!--fwp-loop--> <h2>זכויות נושאי מידע בדין הישראלי</h2><h2>סקירה של תיקון מס’ 13 לחוק הגנת הפרטיות </h2><h2>סקירה של תיקון מס’ 13 לחוק הגנת הפרטיות</h2><h2>privacy at war – summary of second webinar</h2><h2>Privacy at war – summary of first webinar</h2><h2>מדיניות AI בישראל</h2><h2>פרטיות במלחמה – סיכום חלק שני</h2><h2>פרטיות במלחמה – סיכום חלק ראשון</h2><h2>תיקונים מוצעים בחוק השב”כ</h2><h2>הצעת חוק הגנת הפרטיות (תיקון מס’ 14), 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href="https://techpolicy.org.il/he/blog/%d7%96%d7%9b%d7%95%d7%99%d7%95%d7%aa-%d7%a0%d7%95%d7%a9%d7%90%d7%99-%d7%9e%d7%93%d7%99%d7%a2-%d7%91%d7%93%d7%99%d7%9f-%d7%94%d7%99%d7%a9%d7%a8%d7%90%d7%9c%d7%99/" class="authored-post__img"> <img width="936" height="587" src="https://techpolicy.org.il/wp-content/uploads/2024/11/data-subject-right.jpg" class="attachment-post-thumbnail size-post-thumbnail wp-post-image" alt="" decoding="async" srcset="https://techpolicy.org.il/wp-content/uploads/2024/11/data-subject-right.jpg 936w, https://techpolicy.org.il/wp-content/uploads/2024/11/data-subject-right-300x188.jpg 300w, https://techpolicy.org.il/wp-content/uploads/2024/11/data-subject-right-768x482.jpg 768w, https://techpolicy.org.il/wp-content/uploads/2024/11/data-subject-right-18x12.jpg 18w" sizes="(max-width: 936px) 100vw, 936px" /> </a> <div class="authored-post__title"> <a 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\u05d4\u05e4\u05e8\u05d8\u05d9\u05d5\u05ea<\/span><span class=\"facetwp-counter\">(8)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"ai\"><span class=\"facetwp-display-value\">AI<\/span><span class=\"facetwp-counter\">(7)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"ai-ethics\"><span class=\"facetwp-display-value\">AI Ethics<\/span><span class=\"facetwp-counter\">(7)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"artificial-intelligence\"><span class=\"facetwp-display-value\">Artificial Intelligence<\/span><span class=\"facetwp-counter\">(7)<\/span><\/div><\/div><a class=\"facetwp-toggle\">See {num} more<\/a><a class=\"facetwp-toggle facetwp-hidden\">See less<\/a>","authors":"<div class=\"facetwp-checkbox\" data-value=\"3033\"><span class=\"facetwp-display-value\">Rivki Dvash<\/span><span class=\"facetwp-counter\">(40)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"184\"><span class=\"facetwp-display-value\">Limor Shmerling Magazanik<\/span><span class=\"facetwp-counter\">(28)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"309\"><span class=\"facetwp-display-value\">Sivan Tamir<\/span><span class=\"facetwp-counter\">(18)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"2096\"><span class=\"facetwp-display-value\">Noam Rosen<\/span><span class=\"facetwp-counter\">(11)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"180\"><span class=\"facetwp-display-value\">Omer Tene<\/span><span class=\"facetwp-counter\">(4)<\/span><\/div><div class=\"facetwp-overflow facetwp-hidden\"><div class=\"facetwp-checkbox\" data-value=\"4802\"><span class=\"facetwp-display-value\">Lior Goldwasser\u00a0<\/span><span class=\"facetwp-counter\">(3)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"327\"><span class=\"facetwp-display-value\">Ahuva Goldstand<\/span><span class=\"facetwp-counter\">(2)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"171\"><span class=\"facetwp-display-value\">Jules Polonetsky<\/span><span class=\"facetwp-counter\">(2)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"315\"><span class=\"facetwp-display-value\">Liron Tzur Neumann<\/span><span class=\"facetwp-counter\">(2)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"3824\"><span class=\"facetwp-display-value\">Yael Ram<\/span><span class=\"facetwp-counter\">(2)<\/span><\/div><\/div><a class=\"facetwp-toggle\">See {num} more<\/a><a class=\"facetwp-toggle facetwp-hidden\">See less<\/a>","dates":"<div class=\"facetwp-checkbox\" data-value=\"2024\"><span class=\"facetwp-display-value\">2024<\/span><span class=\"facetwp-counter\">(8)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"2023\"><span class=\"facetwp-display-value\">2023<\/span><span class=\"facetwp-counter\">(10)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"2022\"><span class=\"facetwp-display-value\">2022<\/span><span class=\"facetwp-counter\">(19)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"2021\"><span class=\"facetwp-display-value\">2021<\/span><span class=\"facetwp-counter\">(18)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"2020\"><span class=\"facetwp-display-value\">2020<\/span><span class=\"facetwp-counter\">(32)<\/span><\/div><div class=\"facetwp-overflow facetwp-hidden\"><div class=\"facetwp-checkbox\" data-value=\"2019\"><span class=\"facetwp-display-value\">2019<\/span><span class=\"facetwp-counter\">(11)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"2018\"><span class=\"facetwp-display-value\">2018<\/span><span class=\"facetwp-counter\">(5)<\/span><\/div><div class=\"facetwp-checkbox\" data-value=\"2016\"><span class=\"facetwp-display-value\">2016<\/span><span class=\"facetwp-counter\">(1)<\/span><\/div><\/div><a class=\"facetwp-toggle\">See {num} more<\/a><a class=\"facetwp-toggle facetwp-hidden\">See less<\/a>"},"template":"","settings":{"debug":"Enable debug mode in [Settings > FacetWP > Settings]","pager":{"page":1,"per_page":10,"total_rows":104,"total_pages":11},"num_choices":{"tags":10,"authors":10,"dates":8},"labels":{"search":"Search","tags":"Tags","authors":"Authors","dates":"Dates"},"search":{"auto_refresh":"no"},"tags":{"show_expanded":"no"},"authors":{"show_expanded":"no"},"dates":{"show_expanded":"no"}}},"expand":"[+]","collapse":"[-]"}; window.FWP_HTTP = {"get":[],"uri":"he\/blog\/%d7%9e%d7%91%d7%98-%d7%94%d7%a9%d7%95%d7%95%d7%90%d7%aa%d7%99-%d7%a2%d7%9c-%d7%9e%d7%95%d7%93%d7%9c%d7%99%d7%9d-%d7%a9%d7%9c-%d7%94%d7%92%d7%a0%d7%aa-%d7%94%d7%a4%d7%a8%d7%98%d7%99%d7%95%d7%aa-2","url_vars":[]}; </script> <nav id="pojo-a11y-toolbar" class="pojo-a11y-toolbar-left pojo-a11y-" role="navigation"> <div class="pojo-a11y-toolbar-toggle"> <a class="pojo-a11y-toolbar-link pojo-a11y-toolbar-toggle-link" href="javascript:void(0);" title="כלי נגישות" role="button" 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version="1.1" xmlns="http://www.w3.org/2000/svg" width="1em" viewbox="0 0 448 448"><title data-no-translation="" data-trp-gettext="">הקטנת טקסט</title><path fill="currentColor" d="M256 200v16c0 4.25-3.75 8-8 8h-144c-4.25 0-8-3.75-8-8v-16c0-4.25 3.75-8 8-8h144c4.25 0 8 3.75 8 8zM288 208c0-61.75-50.25-112-112-112s-112 50.25-112 112 50.25 112 112 112 112-50.25 112-112zM416 416c0 17.75-14.25 32-32 32-8.5 0-16.75-3.5-22.5-9.5l-85.75-85.5c-29.25 20.25-64.25 31-99.75 31-97.25 0-176-78.75-176-176s78.75-176 176-176 176 78.75 176 176c0 35.5-10.75 70.5-31 99.75l85.75 85.75c5.75 5.75 9.25 14 9.25 22.5z"></path></svg></span><span class="pojo-a11y-toolbar-text" data-no-translation="" data-trp-gettext="">הקטנת טקסט</span> </a> </li> <li class="pojo-a11y-toolbar-item"> <a href="#" class="pojo-a11y-toolbar-link pojo-a11y-btn-background-group pojo-a11y-btn-grayscale" data-action="grayscale" data-action-group="schema" tabindex="-1" role="button"> <span class="pojo-a11y-toolbar-icon"><svg version="1.1" 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data-no-translation="" data-trp-gettext="">ניגודיות שלילית</title><path fill="currentColor" d="M416 240c-23.75-36.75-56.25-68.25-95.25-88.25 10 17 15.25 36.5 15.25 56.25 0 61.75-50.25 112-112 112s-112-50.25-112-112c0-19.75 5.25-39.25 15.25-56.25-39 20-71.5 51.5-95.25 88.25 42.75 66 111.75 112 192 112s149.25-46 192-112zM236 144c0-6.5-5.5-12-12-12-41.75 0-76 34.25-76 76 0 6.5 5.5 12 12 12s12-5.5 12-12c0-28.5 23.5-52 52-52 6.5 0 12-5.5 12-12zM448 240c0 6.25-2 12-5 17.25-46 75.75-130.25 126.75-219 126.75s-173-51.25-219-126.75c-3-5.25-5-11-5-17.25s2-12 5-17.25c46-75.5 130.25-126.75 219-126.75s173 51.25 219 126.75c3 5.25 5 11 5 17.25z"></path></svg></span><span class="pojo-a11y-toolbar-text" data-no-translation="" data-trp-gettext="">ניגודיות שלילית</span> </a> </li> <li class="pojo-a11y-toolbar-item"> <a href="#" class="pojo-a11y-toolbar-link pojo-a11y-btn-background-group pojo-a11y-btn-light-background" data-action="light-background" data-action-group="schema" tabindex="-1" role="button"> <span class="pojo-a11y-toolbar-icon"><svg version="1.1" xmlns="http://www.w3.org/2000/svg" width="1em" viewbox="0 0 448 448"><title data-no-translation="" data-trp-gettext="">רקע בהיר</title><path fill="currentColor" d="M184 144c0 4.25-3.75 8-8 8s-8-3.75-8-8c0-17.25-26.75-24-40-24-4.25 0-8-3.75-8-8s3.75-8 8-8c23.25 0 56 12.25 56 40zM224 144c0-50-50.75-80-96-80s-96 30-96 80c0 16 6.5 32.75 17 45 4.75 5.5 10.25 10.75 15.25 16.5 17.75 21.25 32.75 46.25 35.25 74.5h57c2.5-28.25 17.5-53.25 35.25-74.5 5-5.75 10.5-11 15.25-16.5 10.5-12.25 17-29 17-45zM256 144c0 25.75-8.5 48-25.75 67s-40 45.75-42 72.5c7.25 4.25 11.75 12.25 11.75 20.5 0 6-2.25 11.75-6.25 16 4 4.25 6.25 10 6.25 16 0 8.25-4.25 15.75-11.25 20.25 2 3.5 3.25 7.75 3.25 11.75 0 16.25-12.75 24-27.25 24-6.5 14.5-21 24-36.75 24s-30.25-9.5-36.75-24c-14.5 0-27.25-7.75-27.25-24 0-4 1.25-8.25 3.25-11.75-7-4.5-11.25-12-11.25-20.25 0-6 2.25-11.75 6.25-16-4-4.25-6.25-10-6.25-16 0-8.25 4.5-16.25 11.75-20.5-2-26.75-24.75-53.5-42-72.5s-25.75-41.25-25.75-67c0-68 64.75-112 128-112s128 44 128 112z"></path></svg></span><span class="pojo-a11y-toolbar-text" data-no-translation="" data-trp-gettext="">רקע בהיר</span> </a> </li> <li class="pojo-a11y-toolbar-item"> <a href="#" class="pojo-a11y-toolbar-link pojo-a11y-btn-links-underline" data-action="links-underline" data-action-group="toggle" tabindex="-1" role="button"> <span class="pojo-a11y-toolbar-icon"><svg version="1.1" xmlns="http://www.w3.org/2000/svg" width="1em" viewbox="0 0 448 448"><title data-no-translation="" data-trp-gettext="">קישורים קו תחתון</title><path fill="currentColor" d="M364 304c0-6.5-2.5-12.5-7-17l-52-52c-4.5-4.5-10.75-7-17-7-7.25 0-13 2.75-18 8 8.25 8.25 18 15.25 18 28 0 13.25-10.75 24-24 24-12.75 0-19.75-9.75-28-18-5.25 5-8.25 10.75-8.25 18.25 0 6.25 2.5 12.5 7 17l51.5 51.75c4.5 4.5 10.75 6.75 17 6.75s12.5-2.25 17-6.5l36.75-36.5c4.5-4.5 7-10.5 7-16.75zM188.25 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