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
December 18, 2014 -- Updated 2311 GMT (0711 HKT)
President Obama has been flexing his executive muscles lately despite Democrat's losses, writes Gloria Borger
December 18, 2014 -- Updated 1951 GMT (0351 HKT)
Jeff Yang says the film industry's surrender will have lasting implications.
December 18, 2014 -- Updated 2113 GMT (0513 HKT)
Newt Gingrich: No one should underestimate the historic importance of the collapse of American defenses in the Sony Pictures attack.
December 10, 2014 -- Updated 1255 GMT (2055 HKT)
Dean Obeidallah asks how the genuine Stephen Colbert will do, compared to "Stephen Colbert"
December 18, 2014 -- Updated 1734 GMT (0134 HKT)
Some GOP politicians want drug tests for welfare recipients; Eric Liu says bailed-out execs should get equal treatment
December 18, 2014 -- Updated 1342 GMT (2142 HKT)
Louis Perez: Obama introduced a long-absent element of lucidity into U.S. policy on Cuba.
December 16, 2014 -- Updated 1740 GMT (0140 HKT)
The slaughter of more than 130 children by the Pakistani Taliban may prove as pivotal to Pakistan's security policy as the 9/11 attacks were for the U.S., says Peter Bergen.
December 17, 2014 -- Updated 1600 GMT (0000 HKT)
The Internet is an online extension of our own neighborhoods. It's time for us to take their protection just as seriously, says Arun Vishwanath.
December 16, 2014 -- Updated 2154 GMT (0554 HKT)
Gayle Lemmon says we must speak out for the right of children to education -- and peace
December 17, 2014 -- Updated 1023 GMT (1823 HKT)
Russia's economic woes just seem to be getting worse. How will President Vladimir Putin respond? Frida Ghitis gives her take.
December 17, 2014 -- Updated 0639 GMT (1439 HKT)
Australia has generally seen itself as detached from the threat of terrorism. The hostage incident this week may change that, writes Max Barry.
December 12, 2014 -- Updated 2020 GMT (0420 HKT)
Thomas Maier says the trove of letters the Kennedy family has tried to guard from public view gives insight into the Kennedy legacy and the history of era.
December 15, 2014 -- Updated 1456 GMT (2256 HKT)
Will Congress reform the CIA? It's probably best not to expect much from Washington. This is not the 1970s, and the chances for substantive reform are not good.
December 15, 2014 -- Updated 2101 GMT (0501 HKT)
From superstorms to droughts, not a week goes by without a major disruption somewhere in the U.S. But with the right planning, natural disasters don't have to be devastating.
December 15, 2014 -- Updated 1453 GMT (2253 HKT)
Would you rather be sexy or smart? Carol Costello says she hates this dumb question.
December 14, 2014 -- Updated 2253 GMT (0653 HKT)
A story about Pope Francis allegedly saying animals can go to heaven went viral late last week. The problem is that it wasn't true. Heidi Schlumpf looks at the discussion.
December 14, 2014 -- Updated 1550 GMT (2350 HKT)
Democratic leaders should wake up to the reality that the party's path to electoral power runs through the streets, where part of the party's base has been marching for months, says Errol Louis
December 13, 2014 -- Updated 2123 GMT (0523 HKT)
David Gergen: John Brennan deserves a national salute for his efforts to put the report about the CIA in perspective
December 12, 2014 -- Updated 1426 GMT (2226 HKT)
Anwar Sanders says that in some ways, cops and protesters are on the same side
December 11, 2014 -- Updated 1439 GMT (2239 HKT)
A view by Samir Naji, a Yemeni who was accused of serving in Osama bin Laden's security detail and imprisoned for nearly 13 years without charge in Guantanamo Bay
December 14, 2014 -- Updated 1738 GMT (0138 HKT)
S.E. Cupp asks: How much reality do you really want in your escapist TV fare?
December 11, 2014 -- Updated 1828 GMT (0228 HKT)
Rip Rapson says the city's 'Grand Bargain' saved pensions and a world class art collection by pulling varied stakeholders together, setting civic priorities and thinking outside the box
December 13, 2014 -- Updated 2310 GMT (0710 HKT)
Glenn Schwartz says the airing of the company's embarrassing emails might wake us up to the usefulness of talking in-person instead of electronically
December 12, 2014 -- Updated 2233 GMT (0633 HKT)
The computer glitch that disrupted air traffic over the U.K. on Friday was a nuisance, but not dangerous, says Les Abend
ADVERTISEMENT