Informed Consent After the Human Genome Project

Human genome research destabilizes established notions of the "consenting research subject," because individuals who donate DNA samples for research studies necessarily reveal sensitive information not only about themselves, but also about others genetically 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 dialogue" 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.