Disclosing genetic information to family members without consent: Five Australian case studies |
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| Institution: | 1. Office of the Chief Scientific Officer, Geisinger, MC 30-42, 100 North Academy Avenue, Danville, PA 17822, USA;2. Center for Newborn Screening, Ethics, and Disability Studies, RTI International, 3040 East Institute Drive, Research Triangle Park, NC 27709, USA;3. Department of Pediatrics, Section of Genetics, University of Colorado Anschutz Medical Campus, East 17th Avenue, Aurora, CO 80045, USA;1. Health Economics Unit, Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Victoria, Australia;2. Australian Genomics Health Alliance, Melbourne, Victoria, Australia;3. Murdoch Children’s Research Institute, Melbourne, Victoria, Australia;4. Victorian Clinical Genetics Services, Murdoch Children’s Research Institute, Melbourne, Victoria, Australia;5. Department of Pediatrics, University of Melbourne, Melbourne, Victoria, Australia;6. Monash Genetics, Monash Health, Melbourne, Victoria, Australia;7. Department of Pediatrics, Monash University, Melbourne, Victoria, Australia;8. Melbourne Genomics Health Alliance, Melbourne, Victoria, Australia;1. Institute of Medical Biology, A*STAR, Singapore, Singapore;2. Al-Balqa Applied University, Faculty of Science, Al-Salt, Jordan;3. Pediatric Neurology Research Center, SBMU, Tehran, Iran;4. Institute of Molecular and Cell Biology, A*STAR, Singapore, Singapore;5. Genetics Service, Department of Paediatrics, KK Women''s and Children''s Hospital, Singapore, Singapore;6. KK Research Centre, KK Women''s and Children''s Hospital, Singapore, Singapore;7. Institute of Pathology, Centre de Biologie Pathologie, CHRU Lille, France;8. Genetics Department, Sultan Qaboos University Hospital, Oman;9. Medical Genetics Department, School of Medicine, Eskisehir Osmangazi University, Eskisehir, Turkey;10. Service de Génétique Clinique et Université Lille 2, CHRU de Lille, Hôpital Jeanne de Flandre, Lille, France;11. Département de Génétique, Hôpital Necker Enfants Malades, Assistance Publique Hôpitaux de Paris, Paris, France;12. INSERM U1163, Laboratoire d’Embryologie et Génétique des malformations congénitales, Université Paris Descartes, Sorbonne Paris Cite et Institute Imagine, Paris, France;13. Neurogenetics Unit, IRCCS Santa Lucia Foundation, Rome, Italy;14. Department of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore;15. Department of Molecular Medicine, University of Pavia, Pavia, Italy;p. Kariminejad-Najmabadi Pathology & Genetics Center, Tehran, Iran |
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| Abstract: | Genetic risk information is relevant to individual patients and also their blood relatives. Health practitioners (HPs) routinely advise patients of the importance of sharing genetic information with family members, especially for clinically actionable conditions where prevention is possible. However, some patients refuse to share genetic results with at-risk relatives, and HPs must choose whether to use or disclose genetic information without consent. This requires an understanding of their legal and ethical obligations, which research shows many HPs do not have. A recent UK case held that HPs have a duty to a patient's relatives where there is a proximate relationship, to conduct a balancing exercise of the benefit of disclosure of the genetic risk information to the relative against the interest of the patient in maintaining confidentiality. In Australia, there is currently no legal duty to disclose genetic information to a patient's at-risk relatives, but there are laws and guidelines governing unconsented use/disclosure of genetic information. These laws are inconsistent across different Australian states and health contexts, requiring greater harmonisation.Here we provide an up-to-date and clinically accessible resource summarising the laws applying to HPs across Australia, and outline five Australian case studies which have arisen in clinical genetics services, regarding the disclosure of genetic results to relatives without consent. The issues addressed here are relevant to any Australian HP with access to genetic information, as well as HPs and policy-makers in other jurisdictions considering these issues. |
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| Keywords: | Genetics Ethics Disclosure Relatives Duty to warn |
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