New in the Hastings Center Report
“Rhetorical reform” in precision medicine, misunderstanding scientific breakthroughs, closing the gap in genetics education, and more in the September-October 2016 issue.
From “Personalized” to “Precision” Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine
Eric Juengst, Michelle L. McGowan, Jennifer R. Fishman, and Richard A. Settersten, Jr.
Replacing the term “personalized” medicine with “precision” medicine was more than a rhetorical change. It brought ethical and social concerns, conclude the authors based on interviews with 143 proponents of personalized genomic medicine. “Our interviews highlight two ideological shifts in the emerging practice of genomic medicine that the movement’s rebranding both marks and masks,” they write. Their findings show that precision medicine can promote medical paternalism. In addition, with its focus on genomic profiling of entire groups, rather than on an individual’s personal genome, precision medicine carries the risk of stigmatizing certain populations, pressuring potential participants to engage in genomic research studies, and privileging the interests of the group over the interests of individuals.
A good scientific narrative, such as the story about James Watson’s and Francis Crick’s discovery of the double helical structure of DNA on an ordinary Saturday afternoon, can actually mislead public perception about science, argues Evans, a professor of genetics and medicine at the University of North Carolina at Chapel Hill. Breakthroughs like this occur “perhaps, a couple of times each century,” he writes. “And that’s the problem. The story is just so good and so irresistible that it has misled generations of scientists about what to expect regarding a life in science. And more damaging, the resulting breakthrough mentality misleads the public, the media, and society’s decision-makers about how science really works, all to the detriment of scientific progress and our society’s well-being.” Evans recommends ways to prevent misconceptions about scientific progress.
How can we guarantee that people from various socioeconomic, educational, ethnic, religious, and cultural backgrounds are informed about, and can voice opinions on, genetic technologies that increasingly touch their lives? The authors answer that question by discussing the Personal Genetics Education Project, a nonprofit initiative housed within and largely supported by the Department of Genetics at Harvard Medical School. They outline their innovative approach, which uses moral dilemmas to engage and educate the public on issues involving genetics and genetic technologies in ways that are “inclusive of all voices.” Kung directs new initiatives of the project, and Wu is the project’s director.
Also in this issue:
“A Conceptual Model for the Translation of Bioethics Research and Scholarship,” Other Voices (“What Is Bioethics Worth?”), “Ethics Hype?”, and At Law (“The ACA’s Provision on Nondiscrimination Takes Shape”)