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Many bioethicists have raised concerns about consumer vulnerability to overblown promises of test value and understatement of risk. “Companies [are] exploiting a climate of genetic determinism and public anxiety to sell speculative technologies,” writes Byrn Williams-Jones, a medical bioethicist at the University of Montreal, in a critique published in New Genetics and Society. Others have more confidence in the public’s ability to spot an imposter. Benjamin Bates, communications studies professor at Ohio University, concludes from focus groups and interviews that people understand the general principles of genetics and, on their own, think about these tests in light of environmental, behavioral, and family history influences. “We’ve become very good at processing incomplete information and making the best evaluation for this situation,” he says.
Even if consumers pick and choose wisely, can technically difficult, emotionally charged medical care be delivered electronically? Witt and other specialists question whether the companies that sell tests directly to consumers offer adequate pre-test counseling, to check whether a test is appropriate, or follow up with useful interpretation afterward. With genetics becoming ever more complicated, people need help placing a result in the context of their family history, deciding on next steps, and accounting for family-wide consequences.
Barbara Loebel, a genetic counselor at Kaiser, says it’s certainly possible to counsel someone over the phone and do it well. But counseling is not always offered, and Loebel raises concerns about the time and care a small online genetics company can devote to a patient’s psychological needs. “Holding and handling the anxiety, dealing with the equivocal, waiting. There are definitely human connective counseling pieces that are going to get short shrift,” Loebel says. When patients end the call and are left with a printout, they’ll be on their own to try to integrate whatever information they can glean into their own medical care.
Today’s patients do expect to have more control over medical decision-making and often do the research to support that. While Loebel used to be able to guide a patient step-by-step through a clinical plan, she says, now “sometimes they jump you three steps and raise you one.” Recently a geneticist she works with logged onto a computer in the examination room and began showing parents Google images and journal citations about their child’s suspected genetic condition. Like him, Loebel suggests, other physicians must embrace patients’ medical use of the Internet and partner with them in that realm. “The paradigm is changing,” she says. “You have to accept the fact that this is here.”
Sally Lehrman is an award-winning reporter for many publications and broadcast media including Scientific American, Nature, Health, the Boston Globe, Salon.com and the DNA Files, distributed by NPR. Based in Northern California, her honors have included the 1995-96 John S. Knight Fellowship and a shared 2002 Peabody award and Peabody/Robert Wood Johnson Award for excellence in health and medical programming.
