Is Personalized Genomic Medicine Really a Good Thing?

A commentary responding to the article, by the editorial director of Health and Family at Consumer Reports, also was published in the journal. Genomic medicine’s supporters, including private research centers, direct-to-consumer genetic testing companies, and the US National Institutes of Health (Bethesda, MD, USA), are greatly invested in promoting how this information will benefit patients. The authors called this “empowerment rhetoric.” However, the added knowledge that comes from both pharmacogenomic information and genomic susceptibility data could have a negative impact on how much power a does a patient really have.

The results gleaned from pharmacogenomic information could force patients to comply with physicians’ recommendations, the investigators suggest, because molecular profiling would allow clinicians to give orders with more clout. “In fact, because genomic medicine generates more risk information and makes that information the key lens for approaching health and disease, patients may actually find that they have less ability to influence health care decisions and treatments,” the authors wrote.

The advantages of genomic susceptibility data could also go off kilter. First, because disease prevention relies heavily on lifestyle modifications, responsibility is transferred from physician to patient. Patients who do not make the “correct” choices could be deemed irresponsible, according to the investigators. Second, genomic data can for the time being only reveal the health risks of groups of people. Instead of provide individualized evaluations, it pigeonholes people into “genetic superfamilies.” The authors contended, “population classification schemes based on racial and ethnic categories can be actively disempowering for individuals, by encouraging potentially prejudicial associations between their group affiliations and healthcare risks.”

Patient empowerment is promoted as a paradigm shift because it puts medical data in the consumer’s hands, not just the physician. But the authors concluded that the focus on empowerment could conflict with the reality of what patients are willing or able to do with the health data they receive. “The idea of patient empowerment may run up against not only the limits of patients’ control over their health, but also the limits of patient control over healthcare systems,” the authors stated.

The authors of the report are Eric T. Juengst, director of the Center for Bioethics and professor in the departments of social medicine and genetics at the University of North Carolina, Chapel Hill (USA); Michael A. Flatt, a doctoral candidate in sociology at Case Western Reserve University (Cleveland, OH, USA); and Richard A. Settersten, Jr., professor of social and behavioral health sciences and endowed director of the Hallie E. Ford Center for Healthy Children and Families in the College of Public Health and Human Sciences at Oregon State University (Corvallis, USA).

In a commentary on the article, Ronni Sandroff, editorial director of Health and Family at Consumer Reports, conceded that pharmacogenomics could take control away from a patient if a health insurance company opted not to cover a medicine that was shown to work infrequently in people with a specific genetic composition. But even an increase in patient empowerment can have disadvantages if it shifts the responsibility for healthcare to patients and denounces individuals who do not, or cannot, make the “right” health choices. Ms. Sandroff noted that the greatest hurdle in preventive medicine is getting people to exercise more, eat less, and decrease stress. Whether or not genetic susceptibility data will in reality empower patients by moving them toward healthier lifestyles is not clear. “This is a question that needs more serious study,” she noted.

Nevertheless, Ms. Sandroff reported that consumer participation in genetic research--“a new and growing factor”--could help further scientific knowledge. “That makes it something that professionals should be wondering how to enhance and encourage, rather than fear,” she wrote.

The Hastings Center is a nonpartisan bioethics research institution focused on bioethics and the public interest. The Center involves collaborative interdisciplinary research and dialogue on the ethical and social impact of advances in health care and the life sciences.

Related Links:
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University of North Carolina, Chapel Hill
Case Western Reserve University