Disclosure of genetic risk in the family: A survey of the Flemish general population |
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| Institution: | 1. Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium;2. Melbourne Law School, University of Melbourne, Melbourne, Australia;3. Murdoch Children''s Research Institute, Melbourne, Australia;1. Department of Obstetrics & Gynecology, Radboud University Medical Center, Nijmegen, the Netherlands;2. Department of Human Genetics, Radboud University Medical Center, Nijmegen, the Netherlands;3. Radboud University Medical Center, Radboud Institute for Health Sciences, Nijmegen, the Netherlands;4. Radboud University Medical Center, Radboud Institute for Molecular Life Sciences, Nijmegen, the Netherlands;1. Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, 9112001, Israel;2. Department of Genetics, Hadassah Medical Organization, Jerusalem, 9112001, Israel;1. Department of Dental Anesthesiology, Tokyo Dental College, Tokyo, Japan;2. Department of Pharmacology, Tokyo Dental College, Tokyo, Japan;3. Department of Obstetrics and Gynecology, The Jikei University School of Medicine, Tokyo, Japan;4. Center for Regenerative Medicine, National Center for Child Health and Development Research Institute, Tokyo, Japan;1. Department of Industrial Engineering, Faculty of Engineering, King Abdulaziz University, Jeddah, Saudi Arabia;2. School of Science and Technology, The University of Georgia, Tbilisi, 0171, Georgia;3. Department of Mechanical Engineering, Eastern Mediterranean University, Famagusta, North Cyprus via Mersin 10, Turkey;1. UF de Génomique du Développement, Département de Génétique médicale, Groupe Hospitalier Pitié-Salpêtrière, AP-HP Sorbonne Université, Paris, France;2. Service de Médecine Génomique des maladies rares, UF MP5, Hôpital Necker-Enfants Malades, AP-HP Université Paris Cité, Paris, France;3. UF de Foetopathologie, CHR d’Orléans, Orléans, France;4. Service de Foetopathologie, Hôpital Armand Trousseau, AP-HP Sorbonne Université, Paris, France;5. UF de Génétique Médicale et CRMR « Déficience intellectuelle », Département de Génétique médicale, Groupe Hospitalier Pitié-Salpêtrière, AP-HP Sorbonne Université, Paris, France;6. Laboratoire de Biologie Médicale Multisites SeqOIA, Paris, France;7. Gynécologie obstétrique, Hôpital Trousseau, Centre de Référence C-MAVEM, AP-HP Sorbonne Université, Paris, France;8. Service de Radiologie Pédiatrique, Hôpital Trousseau, AP-HP Sorbonne Université, Paris, France;9. Service de Neurologie Pédiatrique, Hôpital Trousseau, AP-HP Sorbonne Université, Paris, France;10. UF de Génomique Chromosomique, Département de Génétique médicale, Hôpital Armand Trousseau, AP-HP Sorbonne Université, Paris, France |
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| Abstract: | ObjectivesResults from genomic sequencing often have implications not just for patients but also for their relatives. To date, there are no studies in Belgium exploring whether potential relatives would want to be informed of a genetic risk in the family and their preferences on different approaches to disclosure.MethodsWe surveyed the attitudes of the Flemish general population (n = 407) towards receiving genetic information from their family members, including attitudes towards breaches in confidentiality, preferences for who communicates genetic risk and how the information is communicated, and policy approaches to nondisclosure.ResultsMost participants wanted to be informed of their genetic risk and receive genetic testing to confirm their diagnosis. Most preferred to be informed of genetic risk by a close family member, but that when given the choice between a distant family member and a clinician, most participants preferred to be contacted by a clinician.ConclusionIn Belgium there is currently no clear legal pathway for clinicians to directly initiate contact with at-risk relatives, but the responses from members of the Flemish population analyzed in this study indicate that this approach to disclosure of genetic risk deserves further consideration. Our findings indicate that the general population would support legislation allowing clinicians to inform relatives even in cases where the patient did not want to inform them. As this is not currently allowed in Belgium, policy alternatives should be considered. |
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| Keywords: | Ethics Quantitative research Survey Health policy Genetics |
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