Informed Consent after the Human Genome Project
نویسندگان
چکیده
subject,” because individuals who donate DNA samples for research studies necessarily reveal sensitive information not only about themselves, but also about others geneti cally linked to them. An ethical quandary arises from the fact that as virtual research subjects, these genetically linked others may be harmed by research, yet traditional informed consent protocols give them no say about whether proposed projects should be approved. Proliferation of population-specific genetic research in the wake of the Human Genome Project’s completion could magnify this ethical quandary on a vast scale. Such concerns have motivated recent proposals in medical ethics to collectivize the norm of informed consent and require investigators to secure group-based approval for genomic research. Controversy over the wisdom and workability of “communal dia logue” protocols for informed group consent pivots around quintessentially rhetorical issues and highlights the myriad challenges involved in reconciling medical benefits with ethical concerns in the post–Human Genome Project milieu.
منابع مشابه
Eyes wide open: the personal genome project, citizen science and veracity in informed consent.
I am a close observer of the Personal Genome Project (PGP) and one of the original ten participants. The PGP was originally conceived as a way to test novel DNA sequencing technologies on human samples and to begin to build a database of human genomes and traits. However, its founder, Harvard geneticist George Church, was concerned about the fact that DNA is the ultimate digital identifier - in...
متن کاملHas the Human Genome Project Delivered for Healthcare?
undermine its overall benefit. Should we be telling patients about their predisposition to a disease with an unpredictable course? The possibility of both type I and type II errors can also be detrimental – for this reason, counselling and informed consent is imperative. There is little doubt that genetic screening in many circumstances has improved clinical care but how much of that is due to ...
متن کاملI-19: Informed Consent of Infertile Couples in Iran: Legal Controversies
s:3020:"1. Medical Ethics and History of Medicine Research Center, Tehran University of Medical Science, Tehran Iran 2. Department of Epidemiology and Reproductive Health, Reproductive Epidemiology Research Center, Royan Institute, ACECR, Tehran Iran Informed consent is considered the most important step in clinical interventions. According to the Beauchamp’s definition the consent is: “...an a...
متن کاملEthical considerations of research policy for personal genome analysis: the approach of the Genome Science Project in Japan
As evidenced by high-throughput sequencers, genomic technologies have recently undergone radical advances. These technologies enable comprehensive sequencing of personal genomes considerably more efficiently and less expensively than heretofore. These developments present a challenge to the conventional framework of biomedical ethics; under these changing circumstances, each research project ha...
متن کاملParticipants and Study Decliners' Perspectives About the Risks of Participating in a Clinical Trial of Whole Genome Sequencing.
An increasing number of individuals are being recruited to whole genome sequencing (WGS) research. When asked hypothetically, the majority of the public express willingness to participate in this type of research, yet little is known about how many individuals will actually consent to research participation or what they perceive the risks to be. The MedSeq Project is a clinical trial exploring ...
متن کامل