Designating disabled people as a health disparity population; crowdsourcing in research; Biden's dilemma; individualized genetic therapies
Latest News
July 18, 2024
Designating Disabled People a Health Disparity Population NIH decision is a watershed moment, but it's just the beginning.
In designating disabled people as a health disparity population, the National Institutes of Health’s Institute on Minority Health and Health Disparities took a “monumental step in the right direction,” writes Joel Michael Reynolds, a Hastings Center fellow and senior advisor and an associate professor at Georgetown, in JAMA Health Forum. Reynolds discusses this “watershed moment” as “the beginning of appreciating the problem of ableism in medicine, the beginning of making equity of care for disabled patients a priority, and the beginning of not just acknowledging, but mitigating and eliminating the health disparities faced by disabled people.” Read the essay.
Using Crowdsourcing Platforms for Research: The Price of Convenience Experts propose improvements.
Crowdsourcing platforms are increasingly being used to recruit participants for research studies. While these platforms provide rapid access to large samples of participants, the data they produce is often of low quality. Quality control measures are ethically fraught since they can be seen as unfair to the research participants because the measures often involve rejecting their work and/or denying them payment. A new article in Ethics & Human Research proposes a way forward: a checklist of steps that researchers and IRBs can take to be fair to research participants and reject substandard work. Read the article.
Until recently, medicine had little to offer most of the millions of people with rare genetic conditions. That changed in 2019, when the first genetic intervention was developed for a single patient, a 6-year-old child. Individualized genetic therapies give hope to patients and families, but also raise scientific, ethical, and regulatory questions, discussed in a recent article in BMJ coauthored by Hastings Center scholars and colleagues. Learn more.
Ethics Landmark in Need of Update; President Biden's Dilemma Read the latest commentaries in Hastings Bioethics Forum.
“National Research Act at 50: An Ethics Landmark in Need of an Update”: The National Research Act, passed 50 years ago, launched the modern system of ethical oversight of biomedical research in the United States but its actions “were not complete,” write Mark A. Rothstein and Leslie E. Wolf. The NRA was a direct response to the Untreated Syphilis Study at Tuskegee, whose existence and egregious practices were disclosed by Peter Buxtun, whose death was reported this week. Read more.
“Clinical Ethics and a President’s Capacity: Balancing Privacy and Public Interest”: “Where does the President’s right to privacy about his health end and the public’s right to know begin?” writes M. Sara Rosenthal. “Clinical ethics norms and recent legal precedent offer important insights for responding to this ethical dilemma with much-needed transparency in a way that respects all parties involved.” Read more.
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