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Target Article

Genes wide open: Data sharing and the social gradient of genomic privacy
Tobias Haeusermann, Marta Fadda, Alessandro Blasimme, Bastian Greshake Tzovaras & Effy Vayena

This study reports on 13 semistructured in-depth interviews to qualitatively explore the experiences of individuals who publicly shared their direct-to-consumer genetic testing results on the platform openSNP. In particular, we focused on interviewees’ understanding of privacy. Participants reported that the likelihood and the magnitude of privacy harms depend on gender, ethnicity, sexual orient...

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A content analysis of the views of genetics professionals on race, ancestry, and genetics
Sarah C. Nelson, Joon-Ho Yu, Jennifer K. Wagner, Tanya M. Harrell, Charmaine D. Royal & Michael J. Bamshad

Over the past decade, the proliferation of genetic studies on human health and disease has reinvigorated debates about the appropriate role of race and ancestry in research and clinical care. Here we report on the responses of genetics professionals to a survey about their views on race, genetics, and ancestry across the domains of science, medicine, and society. Through a qualitative content anal...

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“I want us to be a normal family”: Toward an understanding of the functions of anonymity among U.S. oocyte donors and recipients
Inmaculada de Melo-Martín, Lisa R. Rubin & Ina N. Cholst

Background: Anonymity remains the more common practice in gamete donations, but legislation prohibiting anonymity with a goal of protecting donor-conceived children’s right to know their genetic origins is becoming more common. However, given the dearth of research investigating the function of anonymity for donors and recipients, it is unclear whether these policies will accomplish their goals....

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Comparison of philosophical concerns between professionals and the public regarding two psychiatric treatments
Laura Yenisa Cabrera, Marisa Brandt, Rachel McKenzie & Robyn Bluhm

Background: Psychiatric interventions are a contested area in medicine, not only because of their history of abuses, but also because their therapeutic goal is to affect emotions, thoughts, beliefs, and behaviors that are regarded as pathological. Because psychiatric interventions affect characteristics that seem central to who we are, they raise issues regarding identity, autonomy, and personal ...

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Ethical understandings of proxy decision making for research involving adults lacking capacity: A systematic review (framework synthesis) of empirical research
Victoria Shepherd, Kerenza Hood, Mark Sheehan, Richard Griffith, Amber Jordan & Fiona Wood

Background: Research involving adults lacking mental capacity relies on the involvement of a proxy or surrogate, although this raises a number of ethical concerns. Empirical studies have examined attitudes towards proxy decision-making, proxies’ authority as decision-makers, decision accuracy, and other relevant factors. However, a comprehensive evidence-based account of proxy decision-making i...

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