Planning to Get a DNA Test? Proceed With Caution

By Gali Katznelson and J. Wesley Boyd

If you are thinking about getting your DNA tested, you are not alone. Astounding numbers of individuals are having their DNA tested and more people than you might think are stunned by what they discover.

We know because we surveyed them.

Home DNA testing is now remarkably common and is readily available for anyone who can afford it. By the end of 2018, it was estimated that 26 million individuals had taken a direct-to-consumer DNA test. [1] Companies like 23andMe and Ancestry.com are only continuing to gain in popularity. Many of the individuals who test their DNA learn that one (or both) of their parents are not their biological parents.

And the numbers aren’t low: Estimates of the numbers of individuals who discover that one of their parents is not a biological parent range from 4 to 12 percent. [2]

Though reactions to this discovery can vary dramatically, few studies have documented how individuals feel once they have learned that they were conceived via egg or sperm donation. We sought to fill this gap and surveyed individuals who were donor-conceived and recently published our findings here in the HMS Journal of Bioethics.

In our survey, we asked survey participants about their thoughts regarding genetic testing and gamete donation, as well as about their response to finding out about their conception.

We collected a total of 143 responses. Approximately 94 percent of our participants were conceived anonymously. Almost 85 percent reported a shift in their “sense of self” upon learning about the nature of their conception and about half sought psychological help in order to cope.

The nature of their conception was also frequently on their minds, given that approximately ¾ of our respondents said that they often or very often think about the nature of their conception. A little under half of our respondents believed that genetic testing companies ought to offer more complete information about using their products even though almost all of our participants (90%) believed being fully informed was impossible.

Given the potentially earth-shattering discoveries that can result from DNA testing, we believe that deciding to test one’s DNA ought to be done cautiously. Although we were already cautious about direct-to-consumer genetic testing, this study gave us further pause.

After all, think about how far genetic science has come in the last 50 years. There is no way that a sperm donor from 50 years ago could have even conceived that someday he’d be easily traceable in a matter of minutes under certain circumstances.

And where will things be in another 50 years? We have no way of knowing how our genetic information could be used, including for possibly sinister ways.

Because of this, even though we believe that even more awareness of and disclosure about potential negative ramifications of genetic testing ought to exist, we also believe—like most of our survey respondents—that full disclosure about the potential harmful effects of genetic testing is simply not possible. One would have to be a fortune teller to look 50 years into the future and know what genetic science will be capable of at that point.

Despite this reality, warnings about the possible consequences of DNA tests nonetheless ought to be as robust as possible. You may receive bad news about your health. Or, like respondents in our study, you may discover that you are not biologically related to one or both of your parents or that you have biological siblings about whom you were unaware. Specifically, companies should warn customers that significant psychological distress can accompany these discoveries—the same distress we saw in many of our respondents.

The upshot of our findings suggests that a lot of thought ought to go into a decision to test one’s own DNA and, moreover, that the full implications of doing so are simply impossible to know given the rapidity of scientific advancement in this arena.

So, are you still thinking about buying that at-home DNA testing kit?

Gali Katznelson is a third-year medical student at the Schulich School of Medicine and Dentistry. She has a master's degree in bioethics from Harvard Medical School. She is interested in health policy.