Angelina Jolie fallout: Should counseling be required with DNA screenings?

Angelina Jolie (Photo: Evan Agostini, AP via USA Today) Angelina Jolie (Photo: Evan Agostini, AP via USA Today)

The decision by Angelina Jolie to undergo a double mastectomy after tests determined she carried a genetic mutation that elevated her chances of developing breast or ovarian cancer has led to renewed calls for expanded genetic screening. It has also raised a disconcerting question—could genetic testing actually be harmful to your health?

As is the case for many people with a family history of breast cancer, the Jolie story is very personal. She carried one of three mutations, specifically BRACA 1, that is linked to ancient Jewish communities. I can relate: My two sisters and I all carry one of these genetic mistakes (in our case, it’s BRCA2). I face a higher likelihood of contracting male breast cancer, as well as ocular and prostate cancers. Many of my family members, including my mother, developed breast or ovarian cancers. My mother died as a consequence of carrying this mutation. My young, female family members worry whether they should have their breasts and ovaries removed as a precaution.



The costs of mandated genetic counseling












This developing drama played out in a recent article by Cheryl Platzman Weinstock in Oprah, reposted on Huffington Post last week. The original title, in the magazine, is inflammatory: “When Genetic Testing Can Be Dangerous to Your Health.” It’s in part a powerful personal story about the consequences of DNA screening misdiagnoses, but it’s positioned as an argument for mandatory screening. It opens with the anecdote of one woman, whose test for breast cancer came back positive. She had a mastectomy only later to find out that the gene variant she had was of “uncertain significance,” and in fact the surgery had not been necessary.

The article is well meaning—after all no one should assume that any diagnosis is definitive, and second opinions are always suggested when major surgery is in the offing. But there were some gaping holes in the story. Readers were not told of the details of the original diagnosis or why the original test was deficient. “Acosta’s ordeal highlights why it’s so important that clinicians be adequately schooled in genetics before they offer testing to patients,” Weinstock writes. “Until the majority of doctors catch up with the science, meeting with a genetic counselor or a clinician with training in the field is your safest option.”

Misguided establishment?

Weinstock’s recommendations—let’s have more and better genetic counseling—are obviously wise. Let’s educate more clinicians and provide genetic counselors, when appropriate. But should we require counseling, which many doctors now argue for?

Large biotech companies, such as Myriad and Genentech, that offer proprietary tests through physicians at far higher prices than those offered by startups, are trying to lock in the current system that by and large requires counseling, regardless of cost. They’ve filed “citizen’s petitions,” which encourage the Food and Drug Administration to regulate smaller competitors out of the market. They are joined in this effort by the American Medical Association, which has urged the FDA to mandate that a physician register a billing event every time patients want to view their own genomic profile—a backdoor way to require counseling. Why the counseling requirement? The AMA and a few members of Congress have suggested that consumers might, in the words of one congressman, “jump off a building” after finding out that they might have a genetic predisposition to a disease. Supposedly, a counselor would preclude such spontaneous meltdowns.

Despite numerous studies debunking the notion that individuals have severe negative psychological reactions to their own genetic information—including a large peer-reviewed report in the New England Journal of Medicine—the AMA holds by its belief that citizens cannot be trusted with direct access to their own DNA data. In taking this stance, the AMA is out of sync with the younger, more technologically savvy physicians of the Health 2.0 movement who believe that one way to keep health costs down is to empower patients by giving them access to their own medical records, including their own genome.

Personal genomics is revelatory and scary—and potentially of great personal and medical importance. Let’s hope that we don’t overreact to the powerful tools now becoming available by setting restrictions on their availability. Genetic counseling should be a choice—not an expensive mandate that will prevent many consumers access to critical knowledge about their health and history.
