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Privacy and confidentiality
Published in Yann Joly, Bartha Maria Knoppers, Routledge Handbook of Medical Law and Ethics, 2014
Genetic privacy, a subset of health privacy, has received a great deal of attention since the launch of the Human Genome Project in 1990 (Alpert 2003; Rothstein 1997). Genetic privacy raises the question of whether privacy law, ethics, and policy ought to focus on specific types of health concerns (e.g. genetic information, mental health information) or should be more general. Thomas Murray, borrowing terminology from the ‘HIV exceptionalism’ debates of the 1980s, coined the term ‘genetic exceptionalism’ to refer to the argument that genetics raises such unique ethical and legal issues that it ought to be addressed separately from other health conditions or information (Murray 1997). Among the reasons why genetics was said to be different is that it has implications for reproduction, family members, and members of the same ethnic group; the immutable nature of genetic inheritance; the predictive capacity of genetic information for future health; historical misuse of genetics; and the distinction afforded to genetic information by many members of the public.
Expert stakeholders’ perspectives on a Data-to-Care strategy for improving care among HIV-positive individuals incarcerated in jails
Published in AIDS Care, 2020
Mara Buchbinder, Colleen Blue, Eric Juengst, Lauren Brinkley-Rubinstein, Stuart Rennie, David L. Rosen
Twenty-five participants cited threat of stigmatization and violence as a potential harm following from such disclosures. Examples included segregation of PLWH during incarceration (e.g., having a separate wing in which only those with HIV stay), violence against PLWH by jail officers or other incarcerated people, and criminalization of HIV. Consequently, accidental disclosure was often seen as a more serious harm in the jail setting than in the general population. Several participants expressed concerns relating to HIV exceptionalism – that is, providing D2C for HIV yet not for other medical conditions. They speculated that providing linkage services only for HIV could exacerbate stigma setting HIV apart from other types of medical conditions and making it more obvious that individuals targeted for enhanced services while in jail or upon release were HIV+.
Is Genetic Exceptionalism Past Its Sell-By Date? On Genomic Diaries, Context, and Content
Published in The American Journal of Bioethics, 2019
“To the extent that …” implicitly acknowledges the possibility that we could do otherwise: that genetic information may not be “uniquely powerful and uniquely personal”; that we are not obliged to accord it special status or unique privacy protection. What if instead we turned down the rhetorical temperature and domesticated genetic information—that is, welcomed it into the commodious abode of all health relevant information about ourselves? That, I confess, was my intention in naming and critiquing genetic exceptionalism. (The “exceptionalism” label was borrowed from my former Hastings Center colleague Ron Bayer’s important work on HIV/AIDS where he employed the concept of HIV exceptionalism [Bayer 1991].)
Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases
Published in The American Journal of Bioethics, 2021
Charles Dupras, Eline M. Bunnik
Conversely, other authors have been critical of ‘genetic exceptionalism’, i.e. the view that genomic information deserves special attention in ethics guidelines, laws and policies (Green and Botkin 2003; Rothstein 2007; Dupras, Beauchamp, et al. 2020). Thomas H. Murray, the father of this critique – and of the term, which he borrowed in 1997 from Ronald Bayer’s (1991) concept of “HIV exceptionalism” – recently observed: