Matt Winkelmeyer/Getty ImagesAs the popularity of consumer genetic tests grows, experts worry that people might be psychologically unprepared to h
I stared at the email announcing “Your 23andMe results are ready” for several minutes before I had the courage to uncover my genetic health and ancestry secrets.
I was excited to discover whether I was predisposed to be lactose intolerant or consume more caffeine than the average person. However, I was nervous about learning of more serious issues ― like whether my DNA made me more likely to get Parkinson’s or Alzheimer’s diseases.
I grew up listening to terrifying stories from great-aunts about what it was like to watch my great-grandmother die from Alzheimer’s at age 62. My relatives wondered if each forgotten vocabulary word was a sign they were getting it, too. Now, for $199, I was going to find out if I had one of the genetic markers that increased my own chances.
As the category of consumer genetic tests explodes, people are going to learn more about themselves than they ever might have imagined. Recently the U.S. Food and Drug Administration announced it was streamlining the approval process to bring more tests to market faster. Some startups, such as Color and Counsyl, focus on revealing your risk for several kinds of cancer and hereditary cholesterol, as well as whether you’re a carrier for certain genetic diseases. Helix and Sequencing have created a DNA app marketplace, where health companies can mine your data to offer you an untold number of insights.
And the holy grail of genetic sequencing ― mapping your whole genome ― is slowly becoming more available to the masses. For $1,000 to $2,000, a handful of labs will reveal your potential blueprint for 1,200 medical conditions and response to 16 drugs. Genomics giant Illumina is at work on technology to bring down the price to $100 in the next few years.
The appeal, of course, is that by learning your risk for certain health conditions, you can make an effort to prevent them. You can eat better, take the right vitamins, finally get serious about strength training, or get screened by doctors more often.
Yet experts worry that consumers might be psychologically unprepared to handle frightening health information they can’t necessarily act on, such as learning you’re at risk for diseases like Alzheimer’s or Parkinson’s that have no cure. In these cases, would the precision medicine revolution be empowering or distressing?
Everyone needs to think about how much they want to know.Erica Ramos, incoming president of the National Society of Genetic Counselors
“Everyone needs to think about how much they want to know. There are people who say, ‘Information is power’ and thrive from learning as much as possible,’” Erica Ramos, the incoming president of the National Society of Genetic Counselors, told HuffPost. “Then there are others who say, ‘You can’t prevent it. You can’t treat it. You can’t modify your lifestyle. Why would I want to know?’”
In fact, the FDA, which approved the 23andMe health tests in April, recognized the potential psychological harm and required the company to ask consumers to opt in on a separate screen to receive the Parkinson’s and late-onset Alzheimer’s reports.
Test takers are prompted by this sentence after ordering: “If you tend to feel anxious or have ever been diagnosed with anxiety or depression, you may have more emotional difficulty with these reports.” The website also urges them to meet with a genetic counselor before receiving the results.
I felt nauseous the day I dropped my vial of spit in the mailbox to have my genetic coding unlocked. Even though my grandmother and mother (so far) have escaped Alzheimer’s, I worried about theories that it could skip a generation or two, despite my plans to do yoga and take fish oil well into my 90s.
I also couldn’t ignore the growing anxiety of baby boomers amid predictions that the number of people in the U.S. who have the disease would nearly triple from 4.7 million in 2010 to 13.8 million in 2050, according to census data. Even Congress is paying attention: Last spring it approved a $400 million budget increase in Alzheimer’s research. And this month, software billionaire Bill Gates announced he had earmarked $100 million of his own money toward research.
I knew that having APOE4, the genetic variant associated with late-onset Alzheimer’s, didn’t mean you were doomed to get it. But I still wondered what it would be like knowing in your 40s that you had a good chance of developing the disease. How would it affect the way you saw your future? Perhaps you’d be inspired to appreciate more sunsets or plan that trip to Italy. Or maybe you’d think about it every morning when you woke up and feel helpless.
There are also other implications our culture has yet to address: Would it change how you planned your retirement or thought about long-term health care insurance? And could insurance companies use this information against you? Despite a 2008 law that forbids employers or insurance companies from discriminating based on your medical history, that isn’t guaranteed forever. Just last March, legislation was introduced in the House that would allow employers to require genetic testing as part of workplace wellness programs.
Genetic counselors stress that the presence of one or more copies of the APOE4 genetic variant does not mean you’re destined for Alzheimer’s disease.
It’s not a diagnosis.Erica Ramos, incoming president of the National Society of Genetic Counselors
“It’s not a diagnosis,” explained Ramos, who also promotes genome sequencing to the public at Illumina. “And it’s just one factor. Your chance of getting late-onset Alzheimer’s is a mix of your environment, family history and DNA. That can be a complicated message to tease out.”
Indeed, the 23andMe test wouldn’t capture all the potential genetic variants that are associated with late-onset Alzheimer’s or screen for the early onset version that’s more rare. And some people who develop Alzheimer’s don’t have any copies of the APOE4 genes at all.
The psychology of detailed health information
When I finally opened my results, my stomach flip-flopped when I read that I had one copy of the APOE4 variant. It’s what 23andMe calls a “slightly increased risk.” It meant I have a 5 to 7 percent chance of getting the disease by age 75 and 27 to 30 percent chance by 85. (It’s 60 percent by age 85 for women who have two copies.)
Then I started to feel better as I realized what this partial picture of my genetic code meant: I had a better chance of not getting it than getting it. And if I did, that was most likely in 40 years when hopefully there would be a cure. Something that had been shrouded in mystery and distant anxiety for years was now knowable. And it lost its power.
It turns out that we’re much better at handling scary health information than we might imagine. One Boston University study of more than 160 adult children whose parents had Alzheimer’s that was published in the New England Journal of Medicine found that those who learned they were genetically predisposed to getting it “showed no more anxiety, depression or test-related distress than those who did not learn their genotype.”
Another study published earlier this year in the American Journal of Bioethics showed that concern ― and curiosity ― often trumps caution. Although nearly 40 percent of the 200 people she surveyed before having their genomes sequenced said they were uncomfortable about receiving results for conditions that had no treatment, the majority still wanted to learn all of their health information.
It’s an old question about whether to disclose potentially upsetting information.Leila Jamal, genetic counselor and bioethicist at Johns Hopkins University
“It’s an old question about whether to disclose potentially upsetting information,” said lead study author Leila Jamal, a genetic counselor and bioethicist at the Berman Institute at Johns Hopkins University. “The evidence shows that people are better at putting information into context than we think they are, so we shouldn’t keep information from them.”
Jamal was surprised that several participants were optimistic that cures for such diseases would be found in their lifetimes.
“What I’m hoping is that the people who can handle this information are the people who seek it out,” she said. “The people who can’t aren’t going to be running to pay $200 to have this done.”
What you should know before taking a genetics test
There are factors that affect your emotional resilience, experts say. It helps if you suspected you had a genetic predisposition from the beginning and went looking for confirmation. It’s also wise to acknowledge the uncertainty of what current technology can tell you.
“Either people expect they’ll have something, or a result is totally unexpected and it’s like, ‘Wham!’” said Andrea Patenaude, a psychologist at Harvard Medical School. “It’s helpful to think, ‘I have some risk, however I don’t fully know what it means. So I’m going to go ahead and live my life that has lots of risks in it.’”
Approaching the test with the knowledge that you can’t influence the outcome ― but you can take steps to reduce your risk for certain diseases ― is also important, adds Emanuel Maidenberg, a clinical professor at the Semel Institute for Neuroscience & Human Behavior at UCLA.
“When you start doing anything in response to bad news, it gives you a sense of control,” he said. “Investing in healthy habits gives you a sense of predictability. That’s truly known to be helpful.”
And there are things you can do now to keep your brain healthy, explains Gary Small, director of the UCLA Longevity Center and a brain imaging researcher.
“Just 20 minutes of daily brisk walking encourages brain cells to sprout branches to communicate more effectively,” Small said.
Strength training also increases the size of the brain’s memory center, he added. Small also recommends managing your stress, maintaining a healthy weight and consuming enough omega-3 fatty acids.
“If you engage in these lifestyle changes, you can stave off symptoms for several years, and that’s meaningful,” he said.
Knowing my risk has motivated me to take charge of my health with more dedication than ever before. I’ve researched supplements. I’m tracking my food and exercise. I’ve lost a few pounds.
This is just the beginning. There are so many genes we don’t know about.Andrea Patenaude, psychologist at Harvard Medical School
So far, I am one of 3 million people who have taken the 23andMe test, although the company did not disclose how many had received recent health reports. Yet more tests are in development that will use a more personalized algorithm to better predict one’s genetic risk for Alzheimer’s.
“This is just the beginning. There are so many genes we don’t know about,” Patenaude said. “But I think this information has motivated people to think about their health more globally and take more active steps, rather than sitting there feeling that there’s not much they can do. You are pioneers.”