Back in 2013, actor Angelina Jolie Pitt revealed in a brave op-ed in the New York Times that she had had her breasts removed after getting the bad news that she carried a version of the BRCA1 gene that confers a high risk of breast cancer. How high? Her doctors esimated her lifetime risk of getting the disease at 87 percent and her chances of ovarian cancer at 50 percent.
Earlier this week, Jolie Pitt disclosed in another New York Times op-ed that she had lost the lottery with regard to ovarian cancer and had had her ovaries removed. Given the early upfront warning that genetic testing had provided, she and her physicians kept track of various biomarkers watching for signals that her ovaries were heading down the road toward malignancy. No tumor was found, but the signals were sufficiently worrying that Jolie Pitt chose surgery.
As it happens, I am in Russia this week giving lectures on how new technologies will empower patients and increasingly liberate them from the centralized medical-industrial complex. One of the big topics I discuss is the value of direct-to-consumer genetic testing. During the question and answer period, some audience members have suggested that most people are not informed enough to handle genetic information properly.
Such questioners are reflecting the attitude expressed by Food and Drug Administration bureaucrats in their letter ordering the genetic testing company 23andMe to stop providing their customers with health information. Among many other things, 23andMe had been screening for some of the more prevalent BRCA1 genetic variations. The FDA's letter stated:
For instance, if the BRCA-related risk assessment for breast or ovarian cancer reports a false positive, it could lead a patient to undergo prophylactic surgery, chemoprevention, intensive screening, or other morbidity-inducing actions, while a false negative could result in a failure to recognize an actual risk that may exist.
The FDA's evident assumption is that people who test postive will head right out and lop off their breasts. Apparently, the regulators don't think that what people would actually do is get another test and consult with their physicians.
Jolie Pitt gets it exactly right when she writes:
It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power.
I respond to those wishing to deny genetic information to people who want it that ignorance is never better than knowledge when it comes to making choices, especially the hard choices that reflect your values.
For more background, see my colleague Nick Gillespie's excellent column, "I Want My DNA: The FDA is wrong to restrict access to cheap genotype screening tests."