BMC Medical Ethics 17 (1):67 (2016)
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Abstract |
Precision medicine promises to develop diagnoses and treatments that take individual variability into account. According to most specialists, turning this promise into reality will require adapting the established framework of clinical research ethics, and paying more attention to participants’ attitudes towards sharing genotypic, phenotypic, lifestyle data and health records, and ultimately to their desire to be engaged as active partners in medical research.Notions such as participation, engagement and partnership have been introduced in bioethics debates concerning genetics and large-scale biobanking to broaden the focus of discussion beyond individual choice and individuals’ moral interests. The uptake of those concepts in precision medicine is to be welcomed. However, as data and medical information from research participants in precision medicine cohorts will be collected on an individual basis, translating a participatory approach in this emerging area may prove cumbersome. Therefore, drawing on Joseph Raz’s perfectionism, we propose a principle of respect for autonomous agents that, we reckon, can address many of the concerns driving recent scholarship on partnership and public participation, while avoiding some of the limitations these concept have in the context of precision medicine. Our approach offers a normative clarification to how becoming partners in precision is compatible with retaining autonomy.Realigning the value of autonomy with ideals of direct engagement, we show, can provide adequate normative orientation to precision medicine; it can do justice to the idea of moral pluralism by stressing the value of moral self-determination: and, finally, it can reconcile the notion of autonomy with other more communitarian values such as participation and solidarity.
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DOI | 10.1186/s12910-016-0149-6 |
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References found in this work BETA
Facing Diversity: The Case of Epistemic Abstinence.Joseph Raz - 1990 - Philosophy and Public Affairs 19 (1):3-46.
Research Led by Participants: A New Social Contract for a New Kind of Research.Effy Vayena, Roger Brownsword, Sarah Jane Edwards, Bastian Greshake, Jeffrey P. Kahn, Navjoyt Ladher, Jonathan Montgomery, Daniel O'Connor, Onora O'Neill, Martin P. Richards, Annette Rid, Mark Sheehan, Paul Wicks & John Tasioulas - 2016 - Journal of Medical Ethics 42 (4):216-219.
Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?Catherine Gliwa & Benjamin E. Berkman - 2013 - American Journal of Bioethics 13 (2):32-42.
View all 14 references / Add more references
Citations of this work BETA
Health Research with Big Data: Time for Systemic Oversight.Effy Vayena & Alessandro Blasimme - 2018 - Journal of Law, Medicine and Ethics 46 (1):119-129.
Biomedical Big Data: New Models of Control Over Access, Use and Governance.Alessandro Blasimme & Effy Vayena - 2017 - Journal of Bioethical Inquiry 14 (4):501-513.
Reconceptualizing Autonomy for Bioethics.Lisa Dive & Ainsley J. Newson - 2018 - Kennedy Institute of Ethics Journal 28 (2):171-203.
Big Data, Precision Medicine and Private Insurance: A Delicate Balancing Act.Ine Van Hoyweghen, Effy Vayena & Alessandro Blasimme - 2019 - Big Data and Society 6 (1).
Democratizing Health Research Through Data Cooperatives.Alessandro Blasimme, Effy Vayena & Ernst Hafen - 2018 - Philosophy and Technology 31 (3):473-479.
View all 10 citations / Add more citations
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