Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine

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

Have We Asked Too Much of Consent?Barbara A. Koenig - 2014 - Hastings Center Report 44 (4):33-34.
Direct-to-Consumer Genomics on the Scales of Autonomy.E. Vayena - 2015 - Journal of Medical Ethics 41 (4):310-314.
Facing Diversity: The Case of Epistemic Abstinence.Joseph Raz - 1990 - Philosophy and Public Affairs 19 (1):3-46.

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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.
Reconceptualizing Autonomy for Bioethics.Lisa Dive & Ainsley J. Newson - 2018 - Kennedy Institute of Ethics Journal 28 (2):171-203.

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