Are COVID-19 Swab Samples a Threat to Your DNA Privacy?

Arthur L. Caplan, PhD


January 13, 2021

This transcript has been edited for clarity.

Hi. I'm Art Caplan. I'm at the Division of Medical Ethics at the New York University School of Medicine. An interesting lawsuit has been filed surrounding coronavirus testing, and it raises a set of issues that I think deserves more attention and more thought than perhaps it's been given.

We know that testing is not adequate. We need more testing, and I'd like to see more rapid testing take place. I think it's too expensive now and testing is not widely enough available. The United States is not using it effectively to figure out who's been exposed and quarantine them, and perhaps be able to do more selective shutdowns rather than shutting down entire areas, entire counties, or entire states.

Testing would be useful for individuals to know if they were, for example, sending their kids back to school. Has the child or teenager been positive? Have they been negative for a few days? That would really open the schools back up.

Parents in New York City, along with some teachers, have asked a judge to suspend mandatory testing. Why? Doesn't it make sense to test these pupils before they go back to school or while they're in school, to make sure not only that they're as safe as can be, but also — because kids don't really get as sick from this virus — to protect teachers, janitors, administrators, food handlers, cleaners, and older people who are more at risk and are in the schools?

Why sue about testing? What the parents and teachers realized is that when you get tested, there's a swab taken of your nose — or pretty soon there may be a spit sample on a strip of paper — and it's sent off to commercial testing labs. They have the samples and they also know a little bit about who's positive. In theory, because they have your DNA, they or someone else could learn more. That's what the parents and teachers are worrying about.

They're basically saying that they want an assurance that these samples are going to be destroyed, that there's no risk to their privacy, and there's no danger that third parties beyond those who need to know within the school system are going to see the results of these tests. Is that a reasonable thing to worry about? Well, it is.

We haven't thought much in terms of testing for coronavirus about who gets the samples and what they do with them and where they go. The company who's got the testing — in this case, I think it's called Fulgent Genetics, which is not a company I know, but they seem to be doing the testing — says they're going to destroy all the samples, they're not selling them to anybody else, and they're not going to use them for anything. The parents and teachers say, "Let's see the contract. We want the assurance." That may be reasonable to do.

On the other hand, the parents raise an interesting question: What if you could use those samples and figure out who, among the kids, is more prone to be infected? Is there any genetic basis to being a spreader as opposed to noninfectious, or learning more about ways to control the plague? If so, maybe the parents, the teachers, and the students would all be excited about the possibility of commercial labs or pharmaceutical companies getting hold of samples in New York or anywhere in the country and trying to study them, hopefully to control the coronavirus more effectively.

Maybe there are forms of research that are worth doing. The whole point being that, in the age in which we see testing and collection of swabs and our DNA as a result — and more testing, I hope, to come soon — we should think about what happens to the DNA samples.

Basically, the samples are out there. The parents in New York and the teachers are raising an important point, which is that everybody should get informed consent and know the fate of the samples. Some may decide to make them available for research whereas some may want them destroyed. Whatever the fate, everybody ought to know and it ought to be part of the consent to testing that we all know what happens to our DNA.

I'm Art Caplan at the Division of Medical Ethics at the New York University School of Medicine. 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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