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In the past few weeks media outlets have been reporting on the release of Human Genome Editing: Science, Ethics, and Governance from the National Academies of Science, Engineering, and Medicine. The report concluded that following more research, it would be ethical to initiate clinical trials using heritable, germline genome editing for therapeutic purposes subject to… Read more
BIOETHICS FORUM ESSAY
Death is beginning to show its age, though I hesitate to even mention that possibility. With an obviously big ego and its intimidating black cloak and scythe, it has always had some less than endearing traits: its doggedness pursuit of the aging, but also its sudden and often unpredictable destruction of human bodies by accidents,… Read more
On February 21, the Department of Homeland Security released new policies prioritizing deportation of undocumented immigrants. Will this policy shift affect health care access for this population of 11 million? Two public health studies from Arizona suggest that immigration crackdowns change health-seeking behavior. During and following the 2010 enactment of Arizona SB 1070, a highly controversial… Read more
It’s the conversation that really interests me. The NASEM report is plop in the middle of a national and indeed a global inquiry into how genetic science can let us tweak the world—human beings, human nature more generally, other organisms, ecosystems, the biosphere at large. What are the terms of that inquiry?
On January 19, the day the final revisions to the Federal Policy for the Protection of Human Subjects were published in the Federal Register, our essay “Public Engagement, Notice-and-Comment Rulemaking, and the Common Rule” was published in IRB: Ethics & Human Research. Of course, when we were drafting the essay last fall, we could not… Read more
An old woman desperately needs medical attention. Yet she fiercely refuses every offer of help from friends, neighbors, and the local doctor. No one will get past her door, she vows. Respecting her autonomy means leaving her alone, possibly to die. Intervening to save her means risking her wrath and losing her friendship and respect.… Read more
Should scientists pursue research that would enable prospective parents to edit the genes of their future children in ways that could be passed onto subsequent generations? Not for now, according to the organizers of a summit held in Washington DC at the end of 2015. The three day International Summit on Human Gene Editing was… Read more
Scientists acknowledge biological, behavioral, and psychological similarities between human and nonhuman primates; hence their use as proxies in biomedical research. At the same time, primates are denied many ethical considerations and basic protections afforded to humans participating in research. The National Institutes of Health recently had an excellent opportunity to consider the moral arguments for… Read more
The 11 million undocumented immigrants in the United States live in all 50 states and rely on local safety-nets and state-level provisions for health care. Launched in 2011, The Hastings Center’s Undocumented Patients project has focused on understanding ethical and policy challenges in providing health care access for this low-income population, which is excluded from… Read more
Mainstream research ethics rests on an incomplete foundation. For the most part, human subjects regulations and guidelines reflect the views of professionals and others who have never been subjects themselves. The knowledge that comes from personal experience is largely missing from research ethics decision-making. Recognizing this problem, researchers and ethicists have turned to empirical investigations… Read more
On December 13th, President Obama signed the 21st Century Cures Act, a bipartisan, multidimensional health research and development bill. The act allocates $4.8 billion to the National Institutes of Health and $500 million to the Food and Drug Administration over the next 10 years for research and treatment development, and mandates reforms of clinical trials… Read more
Health care access is local; creating, financing, expanding, or restricting health care access for a low-income population involves local, state, and federal policies. During the Obama administration, health insurance for the estimated 11 million undocumented immigrants in the United States remained severely restricted by this population’s broad exclusion from federally financed public benefits such as Medicare,… Read more