Skip to main content

Get ready for the risks of genetic testing

By Arthur Caplan, Special to CNN
updated 1:08 PM EDT, Tue March 12, 2013
STORY HIGHLIGHTS
  • Arthur Caplan: Some commercial genetic testing promise a kind of future-telling
  • Caplan: What if the results show you have a huge risk of a fatal disease? Would you freak out?
  • He says finding out about health risks hidden in your genes should involve counsel
  • Caplan: Even if you can deal with bad news, genetic info need to be understood well

Editor's note: Arthur Caplan is the Drs. William F. and Virginia Connolly Mitty professor and director of the Division of Bioethics at New York University Langone Medical Center.

(CNN) -- Would you want to know your future if science could tell it to you?

Some forms of commercial genetic testing promise something like this kind of future-telling. But you need to think long and hard about peeking into your own genes to see what they hold in store for your health. It may not be so easy to cope with the bad news that could result. And it is likely that other people could know your genetic future even if you do not consent to tell them.

Let's say you send your spit (yes, spit is the source of DNA for this kind of testing) off to one of the many companies advertising direct-to-consumer genetic testing and the results showed you had a huge risk of a fatal disease.

Would that freak you out? Would you want to get this news in a letter sent by overnight mail? Wouldn't you prefer to have someone available to counsel you about what negative findings mean and what to do about them?

Privacy vs. prosecution: DNA testing gets high court review

Arthur Caplan
Arthur Caplan

There are people who say they don't need help dealing with whatever the genetic tests reveal. And a new study sponsored by one of the genetic testing companies, 23andMe, backs them up -- sort of. The study suggests most people can get bad news about their risk of getting or transmitting breast cancer to a new generation without going all to pieces emotionally.

I think the study is weak. It involved only a few hundred people who already likely knew they were in a high risk group for breast cancer. It is likely that such people who seek testing will take bad news with greater calm than would you or I if we had no expectations.

Become a fan of CNNOpinion
Stay up to date on the latest opinion, analysis and conversations through social media. Join us at Facebook/CNNOpinion and follow us @CNNOpinion on Twitter. We welcome your ideas and comments.



At most, the study suggests that people in high risk groups who know they are likely to get a genetic disease can handle negative health information. But it doesn't tell us much about how the average person will cope in such a situation.

Remember that genetic testing is still in its infancy.

While some commercial companies promise to tell you what is the optimal diet for you to eat or whether your kid will be a star athlete, the reality is that genetic testing is nowhere near capable of doing any such thing. The accuracy of testing depends on the disease.

Some genes when present mean 100% certainty that you will get a disease, but some raise your risk only 5%. And test predictions are based on studies of small, mainly white, American populations. Testing quality depends on the lab and that is all over the place right now. So much genetic testing is not exceedingly reliable and not always trustworthy in terms of what it means for you.

Nonetheless, finding out about health risks hidden in your genes still seems to me the kind of news that at least requires you make available a trained genetic counselor to help you deal with it.

Remember genetic testing is about risk and probabilities -- and the future is shaped by your genes and your lifestyle -- facts that counselors can help make clear. It is cheaper for companies not to have to offer counseling. But cheaper is not necessarily better if the test comes up snake eyes for high risk for Alzheimer's, Huntington's, diabetes, cancer, depression or blindness for you or your children.

Even if you think you have what it takes to absorb unexpectedly distressing results about your health without the help of a counselor or doctor, there is another reason to be wary of sending off your spit to a company touting affordable genetic testing on the Internet.

In January, a team of American and Israeli scientists showed they could reconstruct the identity of people from supposedly anonymous genetic samples using readily available databases on the Internet. Genetic hackers who get a sample of your DNA could use public databases to figure out whose genetic sample they have and then they would know all about the future written in your genes too.

Maybe people are more resilient than worrywarts like me when it comes to facing potentially upsetting revelation about their genes. Still, it does not take a lot of people actually breaking down and crying to think that competent personal counseling always ought to be an option before finding out about your genetic destiny. And given the problems inherent in guaranteeing personal privacy when it comes to cracking your genetic code, you need to be very careful where and to whom you send your DNA.

Genetic testing is a very useful new tool for helping us stay healthy. But doctors, counselors and even legislators need to get involved so that genetic knowledge can be properly understood and kept private.

Follow @CNNOpinion on Twitter.

Join us at Facebook/CNNOpinion.

The opinions expressed in this commentary are solely those of Arthur Caplan.

ADVERTISEMENT
Part of complete coverage on
updated 8:35 AM EDT, Mon July 21, 2014
Frida Ghitis: Anger over MH17 is growing against pro-Russia separatists. It's time for the Dutch government to lead, she writes
updated 8:27 AM EDT, Mon July 21, 2014
Julian Zelizer says President Obama called inequality the "defining challenge" of our time but hasn't followed through.
updated 7:57 AM EDT, Mon July 21, 2014
Gene Seymour says the 'Rockford Files' actor worked the persona of the principled coward, charming audiences on big and small screen for generations
updated 10:17 AM EDT, Mon July 21, 2014
Daniel Treisman says that when the Russian leader tied his fate to the Ukraine separatists, he set the stage for his current risky predicament
updated 12:42 PM EDT, Fri July 18, 2014
Andrew Kuchins says urgent diplomacy -- not sanctions -- is needed to de-escalate the conflict in Ukraine that helped lead to the downing of an airliner there.
updated 9:50 PM EDT, Fri July 18, 2014
Jim Hall and Peter Goelz say there should be an immediate and thorough investigation into what happened to MH17.
updated 11:07 AM EDT, Fri July 18, 2014
Pilot Bill Palmer says main defense commercial jets have against missiles is to avoid flying over conflict areas.
updated 1:55 PM EDT, Sun July 20, 2014
Valerie Jarrett says that working women should not be discriminated against because they are pregnant.
updated 3:53 PM EDT, Mon July 21, 2014
David Wheeler says the next time you get a difficult customer representative, think about recording the call.
updated 3:33 PM EDT, Fri July 18, 2014
Newt Gingrich says the more dangerous the world becomes the more Obama hides in a fantasy world.
updated 6:11 AM EDT, Fri July 18, 2014
Michael Desch: It's hard to see why anyone, including Russia and its local allies, would have intentionally targeted the Malaysian Airlines flight
updated 3:14 PM EDT, Thu July 17, 2014
LZ Granderson says we must remember our visceral horror at the news of children killed in an airstrike on a Gaza beach next time our politicians talk of war
updated 8:06 AM EDT, Thu July 17, 2014
Sally Kohn says now the House GOP wants to sue Obama for not implementing a law fast enough, a law they voted down 50 times, all reason has left the room.
updated 8:14 AM EDT, Thu July 17, 2014
A street sign for Wall Street
Sens. Elizabeth Warren, John McCain and others want to scale back the "too big to fail" banks that put us at risk of another financial collapse.
updated 4:16 PM EDT, Thu July 17, 2014
Newt Gingrich writes an open letter to Robert McDonald, the nominee to head the Veterans Administration.
updated 12:01 PM EDT, Fri July 18, 2014
Paul Begala says Dick Cheney has caused an inordinate amount of damage yet continues in a relentless effort to revise the history of his failures.
updated 10:04 AM EDT, Fri July 18, 2014
Kids who takes cell phones to bed are not sleeping, says Mel Robbins. Make them park their phones with the parents at night.
updated 1:29 PM EDT, Thu July 17, 2014
Buzz Aldrin looked at planet Earth as he stood on talcum-like lunar dust 45 years ago. He thinks the next frontier should be Mars.
updated 2:04 PM EDT, Wed July 16, 2014
Mark Zeller never thought my Afghan translator would save his life by killing two Taliban fighters who were about to kill him. The Taliban retaliated by placing him on the top of its kill list.
updated 11:18 AM EDT, Thu July 17, 2014
Jeff Yang says an all-white cast of Asian characters in cartoonish costumes is racially offensive.
updated 9:24 PM EDT, Wed July 16, 2014
Gary Ginsberg says the late John F. Kennedy Jr.'s reaction to an event in 1995 summed up his character
updated 12:41 PM EDT, Wed July 16, 2014
Meg Urry says most falling space debris lands on the planet harmlessly and with no witnesses.
ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT