Last week, the Food & Drug Administration changed a rule than had previously stopped genetic testing companies from disclosing certain disease risks (for ailments like Alzheimer's and Parkinson's) to customers. Now, companies like 23andMe, the largest commercial gene-testing outfit in the United States, can disclose that information.
I joined many people in cheering for this change. Just six months ago, I had my genes tested and was fascinated with the results. My ancestry details included both expected and totally unexpected results, and the "fun" health info the company was allowed to disclose (hair curliness, sleep restlessness and caffeine-tolerance details) before the FDA changed the rule was interesting — and left me wanting for more. I was angry when I found out that I couldn't learn more about my disease risks — and it's important to note that these are risks, not certainties. Just because you have a higher risk for, say, Parkinson's, is no guarantee that you'll get the disease. Most genetic testing is to one extent or another, depending on the disease, a numbers game.
Why weren't testing companies allowed to disclose information about serious diseases before? Jack Nicholson's character in the film "A Few Good Men" expressed it best when he condescendingly said, "You can't handle the truth."
The FDA didn't think that people could responsibly handle difficult information about their disease risk if they were able to obtain it independently. The only way you could get those details would be if you saw a doctor, who ordered the tests, and then a special genetic counselor or the doctor delivered that information to you.
Genetic counselors have an important job. Several friends of mine have significant genetic issues of various kinds and have been helped by those in the profession. But I don't need a mediator between me and information about potential disease risk in my own body. I think the choice about whether I do or do not is mine alone — not the FDA's, and not a doctor's. The idea that an intermediary person is needed to interpret and deliver such information is akin to how doctors of yore thought women wouldn't be able to handle difficult information about their health, and would speak only with their husbands or fathers — who would then make decisions about their care without the women's input. (No, it's not the same thing, but it's based on the same insulting idea.)
A different point of view
Writer Sara Chodosh at Popular Science thinks people like me have underestimated the impact unmediated genetic information would have on some people: "Most will get to rest easy knowing they probably won’t develop a degenerative disease," writes Chodosh. "But some won’t get that reassurance. And if a company is going to sell customers their right to know, they should have to provide help when that knowledge hurts."
It's a nice idea that we should all get counseling when we receive tough news in life, except that we're told information all the time that can and does hurt us, sometimes for the rest of our lives, with the assumption that we're adults and we can handle difficult thoughts and feelings. Anyone who has been fired for being crummy at their job; been told they are pregnant when they don't want to be; anyone who has accidentally broken the law and has had to suffer the consequences; or anyone who has been left at the altar has suffered, knowing something they'd rather not know because it's painful.
Most people do indeed handle hearing that they have a higher risk for a disease just fine. Dr. Robert Green, a genetics professor at Harvard Medical School, did several studies on those who were given a test for their Alzheimer's risk. He found that those who found out their results without a counselor to deliver the news, understood and were able to handle the information.
“I do not want to be cavalier,” Dr. Green told the New York Times. “In some cases people did not realize what they were saying yes to and others did not realize the psychological impact it would have on them. There is some potential for distress, but it is much, much smaller than was anticipated.”
Will there be people who get genetic tests, misunderstand the results, and become distressed because of them? Sure. But does that outweigh the significant cost savings and accessibility over the doctor/counselor model that would allow many more people to afford the tests — and give them the option to make lifestyle changes or prepare better for an uncertain future? I don't think so.
I believe I should be able to get information about my body without interference or opinion from the medical establishment. What I decide to do with that information is my business. Of course, if you would rather have an intermediary when it comes to sensitive information about disease risk, that's completely understandable — 23andMe tests, with their not-insignificant price tags, are hardly required. Genetic testing is an opt-in system and until it's not, I would prefer to make my own choices about what is revealed.