Beyond 23andMe: DNA sequencing clinics for the healthy (and wealthy)

Beyond 23andMe: DNA sequencing clinics for the healthy (and wealthy)Beyond 23andMe: DNA sequencing clinics for the healthy (and wealthy)

Seizing on the surging popularity of at-home DNA testing kits, top academic medical institutions are opening clinics that promise to probe much deeper into your DNA — if you’re willing to pay hundreds or even thousands of dollars out of pocket to learn about disease risks that may be lurking in your genes. Genomic sequencing programs that cater to apparently healthy adults have been started in the past few years at the Mayo Clinic; the University of California, San Francisco; and the HudsonAlpha Institute for Biotechnology, a nonprofit research institution in Alabama. Now, two top Boston hospitals are getting into the potentially lucrative business. Brigham and Women’s Hospital on Friday unveiled a new Preventive Genomics Clinic that will offer a menu of options for a genetic workup, with price tags ranging from $250 to $2,950, depending on how many genes are analyzed; it’s the first program of its kind that will offer the sequencing to children in addition to adults. And next month, Massachusetts General Hospital plans to launch its own clinic for adults that will offer elective sequencing at a similar price range as the Brigham. By scouring hundreds or thousands of genes — far more than most consumer genetics companies — representatives for these clinics told STAT that, in a small fraction of patients, they’re helping diagnose mild genetic diseases as well as turning up markers of elevated risks for inherited conditions both common and rare. The test results allow clinicians to offer further guidance to patients, whether that means encouraging them to take proactive steps such as getting a preventive mastectomy or counseling them to just be more diligent about a screening that was recommended anyway. “I think there’s just more and more interest from patients and families not only because of 23andMe and the like, but because there’s just this understanding that if you can find out information about your health before you become sick, then really our opportunity as physicians to do something to help you is much greater,” said Dr. David Bick, the clinical geneticist who directs the elective genomics program at HudsonAlpha. Close to 50 adults have each paid $7,000 for whole genome sequencing and interpretation since HudsonAlpha launched the offering in 2016, Bick said. Dr. Robert Green, a medical geneticist leading the new clinic at the Brigham, is candid about the limitations of advanced sequencing programs. “It’s clearly not been demonstrated to be cost-effective to promote this on a societal basis,” he said. It’s evident too, he said, that such sequencing leads to pricey follow-up testing. “The question that’s hard to answer is whether there are long-term benefits that justify those health-care costs — whether the sequencing itself, the physician visit, and any downstream testing that’s stimulated will be justified by the situations where you can find and prevent disease,” Green said. Insurers sometimes cover deep genomic sequencing when there’s a clear medical reason for it, such as for people with a long family history of cancer. (The soon-to-launch clinic at Mass General will offer such medically indicated testing, too.) By contrast, insurers generally refuse to cover the elective sequencing offered at the clinics sprouting up at top academic medical centers. There’s not yet strong evidence to indicate that apparently healthy people derive widespread benefits. The result is that the new clinics generally serve only those who can afford to pay cash. That worries some in the medical community. “The idea that genomic sequencing is only going to be accessible by wealthy, well-educated patrons who can pay out of pocket is anathema ...
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