Parents Shouldn't Post Their Child's DNA Online -- Keep It Private

Arthur L. Caplan, PhD


July 15, 2020

This transcript has been edited for clarity.

Hi. I'm Art Caplan. I'm at the NYU School of Medicine in New York City. I run the Division of Medical Ethics there. I want to talk today about a practice that I think doctors should be trying to discourage, which is having parents put information about their kids' DNA online on public sites.

You might say, who would do that? Increasingly, many parents are doing it. I'll give you an example that was reported in the media recently. A mom had kids aged 7 and 10 years old. She knew she had a mutation—not the disease—but a risk factor for a particular Parkinson-like disease, and she wanted to see if the kids had it.

She used the commercial genetic testing company 23andMe to get the test done. The results came back and said at least one of the kids had inherited the mutation. I'm not sure what she did with that information, but she became aware that at least one of the kids was at risk. I don't know if it was a huge risk, but there was some risk of getting this Parkinson-like disease.

The story might have ended there, except then the mom remembered that she'd heard from friends and neighbors that sometimes you can find long-lost relatives if you put your DNA on Facebook or on some of these public genetic information sharing sites. So she put her information up there and the kids' information up there.

I'm not sure why the kids' information was necessary in terms of finding long-lost ancestors, which was the goal here, but she—like many parents are starting to do—just put the information out there without thinking about it.

Well, you do want to think about it. Some of the most intimate facts about a person are their genetic risks. The kids, when they get older, may not be happy that everybody can see their genetic profile and their risk factors.

It's also the case that they could be discriminated against in different situations: sometimes in hiring, if they're trying to work for a small company not protected by anti-genetic discrimination laws; maybe in getting life insurance, maybe in getting disability insurance, and in many other ways.

Genetic information is not neutral. Even finding out that they're at risk for a particular mutation may leave them worrying whether they are getting parkinsonism. Is it going to come early? Maybe they would like to know that, but maybe they wouldn't want that hanging over their heads.

Genetic information is particularly intrusive, particularly sensitive, and it can be used to stigmatize people. If an adult wants to put their information out there and makes that choice in order to find long-lost relatives or to determine something about their ancestry, I might give them a bit of counseling about that.

I'd say that I'm not sure the ancestry findings are all that accurate and I'm not sure every long-lost relative is one you want to meet. They may turn up people that they don't want to have a relationship with, but they can still choose to do it and that's certainly fine with me.

A mature adult can consent and make that choice. But doing it for your children, I think, is a totally different matter. I think we should try to pass legislation that says public websites should not be putting genetic information about minors up there. We should stop that practice.

I think we should be advising parents not to do that. If kids want to put their genetic information out for public view for anybody to find it, they can do that when they get to be 18 or 21 years old. There isn't much reason in posting that information. It doesn't help them medically, it doesn't do much for them before they reach maturity, and I think it's a practice we ought to discourage.

I'm Art Caplan. I'm at the Grossman School of Medicine, Division of Medical Ethics, at NYU. Thanks for watching.

Arthur L. Caplan, PhD, is director of the Division of Medical Ethics at New York University Langone Medical Center and School of Medicine. He is the author or editor of 35 books and 750 peer-reviewed articles as well as a frequent commentator in the media on bioethical issues.

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