Perspective: Today’s regulations, tomorrow’s medicine
By JAKE MILLER
Image: iStock Photo
Image: iStock Photo
As genomic medicine and biomedical research evolve, the way we deal with health care and medical data—as individuals and as a society—are also constantly evolving. Each new breakthrough asks us to think about our genomes in new ways and to reassess regulations for insurance, employment and other marketplaces.
In an opinion piece, Robert Green, HMS associate professor of medicine in the Division of Genetics at Brigham and Women’s Hospital, and coauthors explored this ever-shifting landscape in the context of the landmark 2008 Genetic Information Nondiscrimination Act (GINA). Their perspective piece appeared Jan. 29 in the New England Journal of Medicine.
The first federal antidiscirimination statute passed to address an area where no well-documented historical or contemporary evidence of widespread discrimination exists, GINA was designed to protect people from potential future discrimination due to technological advancements and to allay concerns that people have about how their current data might be used against them in the future, the authors wrote.
“Fear of discrimination may be preventing some people from participating in translational research studies that are exploring the real-world consequences of utilizing genomic information, with its potential for unanticipated or incidental findings,” the authors said in the essay.
Writing with Denise Lautenbach, genetic counselor and senior project manager of the MedSeq Project: Integration of Whole Genome Sequencing into Clinical Medicine at Brigham and Women’s, and Amy Lynn McGuire, Leon Jaworski Professor of Biomedical Ethics and director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine, Green noted that GINA is one part of an evolving set of regulations, social norms and business practices that are grappling with how society should best deal with genomic information while simultaneously learning more about the complicated interrelationship between genetic and environmental risk factors. These struggles raise questions such as: When should it be permissible to discriminate against a person based on their genetic risk factors? And how will that change as we learn more?
Currently, GINA and other regulations prevent genomic discrimination in employment and in health insurance, but not in long-term care insurance.
“As all medicine in a sense becomes genomic medicine, perhaps the genetic nondiscrimination secured by GINA will translate into nondiscrimination in all of medicine,” the authors wrote.