Tests génétiques | Commission d’accès à l’information du Québec

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class="modules-header-page_bg"></div> <div class="modules-header-page_content"> <h1> Tests génétiques </h1> </div> </div> </div> </section> <div id="modules-texte-86637" class="modules-texte intro-page"> <div class="container"> <div class="modules-texte-wrapper"> <div class="wysiwyg "> <p>Les tests génétiques offerts directement aux consommateurs (DAC) peuvent être attirants, car ils promettent de fournir des réponses à différentes questions :</p> <ul> <li>D’où venaient mes ancêtres?</li> <li>Suis-je porteur de certaines maladies? </li> <li>Ai-je un lien de parenté avec telle personne?<br /><br /></li> </ul> <p>Ils soulèvent toutefois des enjeux importants en matière de vie privée et de protection des renseignements personnels. Avant d’acheter un tel test, considérez-les dans votre réflexion.</p> </div> </div> </div> </div> <div id="modules-texte-18000" class="modules-texte pad-normal "> <div class="container"> <div class="modules-texte-wrapper "> <div class="wysiwyg"> <h2>Quels sont les enjeux?</h2> <ul> <li><strong>Consentement : </strong>si les informations données par l’entreprise sont insuffisantes, votre consentement peut difficilement être éclairé;<br /><br /></li> <li><strong>Contrôle : </strong>vous pourriez perdre le contrôle de vos renseignements génétiques, qui sont conservés dans une base de données privée;<br /><br /></li> <li><strong>Sécurité : </strong>leur sécurité dépend des mesures mises en place par l’entreprise, qui pourraient être inadéquates ou modifiables sans préavis;<br /><br /></li> <li><strong>Réutilisation :</strong> vos renseignements génétiques pourraient être réutilisés à des fins qui ne vous conviennent pas, sous réserve de certaines interdictions prévues par la Loi<a href="#_ftn1" target="_blank" rel="noreferrer noopener">[1]</a>;<br /><br /></li> <li><strong>Communication : </strong>ils pourraient être partagés ou vendus si l’entreprise change ses pratiques ou si elle est achetée;<br /><br /></li> <li><strong>Conséquences sur vos proches : </strong>vous partagez une partie importante de votre ADN avec votre famille. Votre décision d’acheter un test génétique pourrait impliquer vos proches puisque les résultats sur les prédispositions liées à la santé pourraient les concerner.</li> </ul> <h2><br />Quoi faire avant d’acheter?</h2> <ul> <li><strong>Lisez la politique de confidentialité</strong> de l’entreprise pour connaître le traitement envisagé pour votre ADN et vos renseignements génétiques : elle devrait être complète et claire;<br /><br /></li> <li><strong>Interrogez-vous sur la confiance que vous accordez à l’entreprise</strong>. Vous lui confierez non seulement des renseignements personnels d’identité, mais aussi votre ADN et, éventuellement, des renseignements de santé;<br /><br /></li> <li><strong>Consultez votre famille immédiate</strong> pour connaître son opinion par rapport à votre démarche;<br /><br /></li> <li><strong>Questionnez-vous sur votre niveau de tolérance au risque</strong>. Il est difficile de prévoir aujourd’hui ce qu’il sera possible de faire ou de connaître plus tard à partir de vos renseignements génétiques;<br /><br /></li> <li><strong>Discutez avec un professionnel de la santé</strong> si vous avez des inquiétudes quant à vos prédispositions à certains problèmes de santé;<br /><br /></li> <li><strong>Réfléchissez à votre droit de ne pas savoir </strong>: vous pourriez préférer ignorer certains renseignements médicaux à votre sujet. En effet, les résultats peuvent générer de l’anxiété ou un faux sentiment de sécurité.</li> </ul> <p><br />Pour plus d’informations, la Commission vous propose une <a href="/uploads/pdfs/CAI_FIC_Tests_Genetiques_Citoyens.pdf" target="_blank" rel="noreferrer noopener">fiche complète (PDF, 1 389 Ko)</a> sur les tests génétiques DAC.</p> <p>Si vous êtes une <strong>entreprise</strong> qui offre des tests génétiques DAC, la Commission vous invite à prendre connaissance de sa sur vos obligations en matière de protection des renseignements personnels.</p> <h2>Quels sont les recours?</h2> <p>Si vous estimez qu’une entreprise fournissant des tests génétiques DAC ne respecte pas ses obligations en vertu de la Loi sur le privé, vous pouvez <a href="/uploads/pdfs/CAI_FO_Plainte_Citoyen.docx" target="_blank" rel="noreferrer noopener">porter plainte à la Commission (DOCX, 171 Ko)</a> ou <a href="https://plainte.cai.gouv.qc.ca/" target="_blank" rel="noreferrer noopener">formulaire en ligne</a>. Celle-ci pourra, selon les circonstances, fournir de l’information, faire enquête et recommander ou ordonner toute mesure propre à assurer la protection des renseignements personnels. La Commission peut également mener une enquête de sa propre initiative.</p> <p><a href="https://www.cai.gouv.qc.ca/commission-acces-information/nous-joindre">Des questions?</a></p> <p> </p> <hr /> <p><a href="#_ftnref1" target="_blank" rel="noreferrer noopener">[1]</a> La <a href="https://laws-lois.justice.gc.ca/fra/lois/G-2.5/TexteComplet.html" target="_blank" rel="noreferrer noopener"><em>Loi sur la non-discrimination génétique</em></a> (loi fédérale) empêche quiconque d’utiliser et de communiquer les résultats d’un test génétique sans votre consentement si ce test est une condition préalable à l’exercice d’une des activités suivantes : a) fournir des biens ou services; b) conclure ou maintenir un contrat ou une entente; c) offrir ou maintenir des modalités d’un contrat ou d’une entente (articles 3 à 5). Cette Loi contient toutefois une exception générale pour la recherche et la santé (article 6).</p> <p> </p> </div> </div> </div> </div> <div class="cta-to-top"> <div class="container"> <div class="modules-texte-wrapper"> <button aria-label="Retour vers le haut" title="Retour vers le haut"> <span class="text">Retour vers le haut </span> <span class="icon"> <svg width="63" height="63" viewbox="0 0 63 63" fill="none" xmlns="http://www.w3.org/2000/svg"> <path d="M31.5 42.5254L31.5 20.4754" stroke="#6288A1" stroke-width="2" stroke-linecap="round" stroke-linejoin="round"/> <path d="M20.475 31.5L31.5 20.475L42.525 31.5" stroke="#6288A1" stroke-width="2" stroke-linecap="round" stroke-linejoin="round"/> </svg> </span> </button> </div> </div> </div> <section id="form-satisfaction" class="form-section-satisfaction"> <div class="container form-container"> <div class="form-wrap satisfaction"> <div class="fui-i"><form id="fui-formulaireDeSatisfaction-rkydac" class="fui-form fui-labels-above-input" 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