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 2:49 PM EDT, Tue April 15, 2014
Kathleen Blee says the KKK and white power or neo-Nazi groups give haters the purpose and urgency to use violence.
updated 7:46 AM EDT, Tue April 15, 2014
Sen. Sheldon Whitehouse and Rep. Henry Waxman say read deep, and you'll see the federal Keystone pipeline report spells out the pipeline is bad news
updated 1:43 PM EDT, Tue April 15, 2014
Frida Ghitis says President Obama needs to stop making empty threats against Russia and consider other options
updated 5:29 PM EDT, Tue April 15, 2014
Peter Bergen and David Sterman say the Kansas Jewish Center killings are part of a string of lethal violence in the U.S. that outstrips al Qaeda-influenced attacks. Why don't we pay more attention?
updated 12:41 PM EDT, Tue April 15, 2014
Danny Cevallos says families of the passengers on Malaysian Airlines Flight 370 need legal counsel
updated 11:23 AM EDT, Mon April 14, 2014
David Frum says Russia is on a rampage of mischief while Western leaders and Western alliances charged with keeping the peace hem and haw
updated 7:56 AM EDT, Mon April 14, 2014
Most adults make the mistakes of hitting the snooze button and of checking emails first thing in the morning, writes Mel Robbins
updated 1:54 PM EDT, Mon April 14, 2014
David Wheeler says as middle-class careers continue to disappear, we need a monthly cash payment to everyone
updated 7:55 AM EDT, Mon April 14, 2014
Democrats need to show more political spine when it comes to the issue of taxes.
updated 11:55 AM EDT, Mon April 14, 2014
Donna Brazile recalls the 50th Anniversary of the Civil Rights Act as four presidents honored the heroes of the movement and Lyndon Johnson, who signed the law
updated 9:17 AM EDT, Mon April 14, 2014
Elmer Smith remembers Chuck Stone, the legendary journalist from Philadelphia who was known as a thorn in the side of police and an advocate for the little guy
updated 2:56 PM EDT, Sun April 13, 2014
Al Franken says Comcast, the nation's largest cable provider, wants to acquire Time Warner Cable, the nation's second-largest cable provider. Should we be concerned?
updated 11:22 AM EDT, Fri April 11, 2014
Philip Cook and Kristin Goss says the Pennsylvania stabbing attack, which caused grave injury -- but not death, carries a lesson on guns for policymakers
updated 3:06 PM EDT, Fri April 11, 2014
Wikipedia lists 105 football movies, but all too many of them are forgettable, writes Mike Downey
updated 10:32 AM EDT, Fri April 11, 2014
John Sutter and hundreds of iReporters set out to run marathons after the bombings -- and learned a lot about the culture of running
updated 12:49 PM EDT, Fri April 11, 2014
Timothy Stanley says it was cowardly to withdraw the offer of an honorary degree to Ayaan Hirsi Ali. The university should have done its homework on her narrow views and not made the offer
updated 10:16 AM EDT, Fri April 11, 2014
Al Awlaki
Almost three years after his death in a 2011 CIA drone strike in Yemen, Anwar al-Awlaki continues to inspire violent jihadist extremists in the U.S, writes Peter Bergen
updated 9:21 PM EDT, Fri April 11, 2014
David Bianculli says Colbert is a smart, funny interviewer, but ditching his blowhard persona to take over the mainstream late-night role may cost him fans
updated 1:31 PM EDT, Thu April 10, 2014
Rep. Paul Ryan says the Republican budget places its trust in the people, not in Washington
updated 5:28 PM EDT, Thu April 10, 2014
Aaron David Miller says Obama isn't to blame for Kerry's lack of progress in resolving Mideast talks
updated 11:22 AM EDT, Mon April 14, 2014
David Weinberger says beyond focusing on the horrors of the attack a year ago, it's worth remembering the lessons it taught about strength, the dangers of idle speculation and Boston's solidarity
updated 12:32 PM EDT, Thu April 10, 2014
Katherine Newman says the motive for the school stabbing attack in Pennsylvania is not yet known, but research on such rampages turns up similarities in suspects and circumstances
updated 7:03 AM EDT, Fri April 11, 2014
Simon Tisdall: Has John Kerry's recent track record left Russia's wily leader ever more convinced of U.S. weakness?
updated 12:40 PM EDT, Thu April 10, 2014
Mel Robbins says Nate Scimio deserves credit for acting bravely in a frightening attack and shouldn't be criticized for posting a selfie afterward
updated 2:39 PM EDT, Wed April 9, 2014
Wendy Townsend says the Rattlesnake Roundup -- where thousands of pounds of snakes are killed and tormented -- is barbaric
updated 9:45 AM EDT, Thu April 10, 2014
Dr. Mary Mulcahy says doctors who tell their patients the truth risk getting bad ratings from them
updated 9:28 AM EDT, Wed April 9, 2014
Peggy Drexler says the married Rep. McAllister, caught on video making out with a staffer, won't get a pass from voters who elected him as a Christian conservative with family values
updated 7:43 AM EDT, Wed April 9, 2014
David Frum says the president has failed to react strongly to crises in Iran, Syria, Ukraine and Venezuela, encouraging others to act out
updated 4:57 PM EDT, Wed April 9, 2014
Eric Liu says Paul Ryan gets it very wrong: The U.S.'s problem is not a culture of poverty, it is a culture of wealth that is destroying the American value linking work and reward
updated 7:51 AM EDT, Wed April 9, 2014
Frida Ghitis writes: "We are still seeing the world mostly through men's eyes. We are still hearing it explained to us mostly by men."
updated 10:08 AM EDT, Thu April 10, 2014
Chester Wisniewski says the Heartbleed bug shows how we're all tangled together, relying on each other for Internet security
updated 3:26 PM EDT, Wed April 9, 2014
Danny Cevallos says an Ohio school that suspended a little kid for pointing his finger at another kid and pretending to shoot shows the growth in "zero tolerance" policies at school run amok
ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT