Skip to main content

Get ready for the risks of genetic testing

By Arthur Caplan, Special to CNN
March 12, 2013 -- Updated 1708 GMT (0108 HKT)
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
September 30, 2014 -- Updated 1653 GMT (0053 HKT)
Jeff Yang calls Ello a wakeup call to Facebook and Twitter, and a sign of hope for fast-rising upstarts Pinterest and Snapchat.
October 1, 2014 -- Updated 1423 GMT (2223 HKT)
Paul Waldman says the Secret Service should examine its procedures to make sure there are no threats to the White House--but without losing the openness so valuable to democracy
October 1, 2014 -- Updated 1455 GMT (2255 HKT)
Jesse Williams says the videotape and 911 call that resulted in police gunning down John Crawford at a Walmart reveals the fatal injustice of racial assumptions
September 30, 2014 -- Updated 2303 GMT (0703 HKT)
Mel Robbins says officials should drop the P.C. pose: The beheading in Oklahoma was not workplace violence. Plenty of evidence shows Alton Nolen was an admirer of ISIS.
September 30, 2014 -- Updated 1911 GMT (0311 HKT)
The Occupy Central movement has already achieved much by bringing greater attention to Hong Kong's struggle for democracy, William Piekos says..
September 30, 2014 -- Updated 1911 GMT (0311 HKT)
The Occupy Central movement has already achieved much by bringing greater attention to Hong Kong's struggle for democracy, writes William Piekos.
September 30, 2014 -- Updated 1413 GMT (2213 HKT)
As Prime Minister Narendra Modi visits America, Madeleine Albright says a world roiled by conflict needs these two great democracies to commit to moving their partnership forward
September 30, 2014 -- Updated 1404 GMT (2204 HKT)
John Sutter: Lake Providence, Louisiana, is the parish seat of the "most unequal place in America." And until somewhat recently, the poor side of town was invisible on Google Street View.
September 29, 2014 -- Updated 1311 GMT (2111 HKT)
Julian Zelizer says in the run up to the 2016 election the party faces divisions on its approach to the U.S.'s place in the world
September 29, 2014 -- Updated 1419 GMT (2219 HKT)
Ruben Navarrette says Common Core supporters can't devise a new set of standards and then fail to effectively sell it.
September 30, 2014 -- Updated 1329 GMT (2129 HKT)
Earlier this month, Kenyans commemorated the heinous attack on the Westgate Mall in Nairobi.
September 30, 2014 -- Updated 1859 GMT (0259 HKT)
David Wheeler says Colorado students are right to protest curriculum changes that downplays civil disobedience.
September 27, 2014 -- Updated 0158 GMT (0958 HKT)
Sally Kohn says when people click on hacked celebrity photos or ISIS videos, they are encouraging the bad guys.
September 26, 2014 -- Updated 1155 GMT (1955 HKT)
Loren Bunche says she walked by a homeless man every day and felt bad about it -- until one day she paused to get to know him
September 30, 2014 -- Updated 1332 GMT (2132 HKT)
ISIS grabs headlines on social media, but hateful speech is no match for moderate voices, says Nadia Oweidat.
September 29, 2014 -- Updated 1233 GMT (2033 HKT)
A new report counts jihadists fighting globally. The verdict? The threat isn't that big, says Peter Bergen.
September 23, 2014 -- Updated 2137 GMT (0537 HKT)
Ebola could become the biggest humanitarian disaster in a generation, writes former British Prime Minister Tony Blair
September 26, 2014 -- Updated 1658 GMT (0058 HKT)
ISIS has shocked the world. But will releasing videos of executions backfire? Four experts give their take.
September 26, 2014 -- Updated 1439 GMT (2239 HKT)
Eric Holder kicked off his stormy tenure as attorney general with a challenge to the public that set tone for six turbulent years as top law-enforcement officer.
September 26, 2014 -- Updated 1309 GMT (2109 HKT)
LZ Granderson says Obama was elected as a war-ending change agent, not a leader who would leave behind for his successor new engagement in Iraq and Syria. Is he as disappointed as the rest of us?
September 24, 2014 -- Updated 0910 GMT (1710 HKT)
Gayle Lemmon says the question now is how to translate all the high-profile feminizing into real gains for women
ADVERTISEMENT