Flawed idea in diversifying genomic data; misinformation in mental health crisis
November 30, 2023
Pitfalls of Diversifying Genomic Data Efforts are based on flawed idea
Health researchers and practitioners often express concern that biomedical technologies are not well tailored for minoritized people, who are underrepresented in health data banks. But efforts to address this issue rely on a flawed idea: that more diverse datasets will directly benefit underserved populations.
“The mantra of ‘getting more people of color’ into genomic databases reproduces the popular belief that race is genetic; social scientists have firmly demonstrated that treating race this way can impede efforts to address social drivers of health,” write medical anthropologists Anna Jabloner and Alexis Walker in the Hastings Center Report.
Efforts to diversify health research need to go hand in hand with more robust benefits for data donors, including financial benefits. Read the essay.
Preventing Misinformation in a Mental Health Crisis Report recommends psychiatric advance directives
When someone is in a mental health crisis, their surrogate decision-maker has an ethical responsibility to speak on their behalf to health professionals. But fulfilling this responsibility is complicated, finds a recent study co-authored by Hastings Center research scholar Virginia A. Brown and Christine Thomas of the University of Texas at Austin.
Family members and other surrogates of young adults with serious mental illnesses tend to withhold crucial health information during a mental health crisis. Withholding information is a form of misinformation, the authors argue. To help prevent this problem, the authors recommend that persons living with serious mental illness (when they have capacity), their surrogates, and health care providers collaborate to create a psychiatric advance directive, a communications tool and medical-legal document that records people’s preferences for care during a mental health crisis. Read the article.
Looking Forward and Outward in These Critical Times Help advance our mission
Since 1969, The Hastings Center has been a leading voice in addressing emerging questions in bioethics, while inviting the broader public to help inform our work. Across these topics, new value conflicts and moral uncertainties continually arise with the emergence of novel technologies, increased focus on ethical issues related to population (in addition to individual) health, and political polarization confronting our society. Philanthropy supports about 45% of our efforts to respond to today’s most pressing ethical challenges confronting society. As we consider how we should illuminate and help address these challenges, will you help advance our mission with a gift this year? Read a letter from Hastings Center President Vardit Ravitsky. Learn more and make a donation.
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