Why the precious secrets of your genetic code are threatened

In this opinion piece, Robert Champ, Anthony W. Orlando, and Arnold J. Rosoff argue that the Biden administration should make DNA privacy a top priority.

Field is professor of law and public health at Drexel University; Orlando is an assistant professor of finance, real estate, and law at California State University, Pomona; and Rosoff is Professor Emeritus of Legal Studies and Health Care Management at Wharton. (This article originally appeared in The Philadelphia Investigator.)

Right now, someone out there might be exposing your intimate genetic data, the very essence of who and who you are. They probably don’t realize they are doing it. They may not even know who you are.

But they do have valuable segments of your genetic code – data that tells a story about your family, your medical history, and all kinds of potential vulnerabilities. If they submit a DNA sample to a genetic testing company, they can share that data with countless researchers, law enforcement and even the general public.

One day, this information could be used against you.

Can you stop them? Can you protect what is legitimate yours?

Answer: unlikely.

We believe it is time for policy makers to protect americans against this risk. The law should make it harder for businesses to share your genetic data, and it should ensure that this data is encrypted and protected in transit. Companies should employ review boards to approve protocols for data collection, storage and sharing, just as federally funded researchers need the approval of committees known as review boards. institutions to conduct research on human subjects.

Never has this challenge been so clear as during the COVID-19 pandemic. Around the world, researchers are rushing to understand our susceptibility to the virus and find better treatments and tracing protocols. In this critical quest, genetic analysis plays an important role.

January 28 was Data Privacy Day, an annual event designated by the United States and 49 other countries to alert us to serious and growing threats to our privacy.

Most of the coverage will focus on the privacy of our online activities – Amazon purchases, Google searches, and Facebook posts. But even more intimate and immutable secrets are being collected by genetic testing companies “direct to the consumer”. As lawmakers line up to investigate Big Tech, few question the intrusions into this most personal data.

Protecting your data is not the number one concern of most businesses. If you’ve ever rubbed your cheek or spat in a tube to learn more about your genealogy, have you bothered to read the company’s privacy policy? Do you even know if they have one? According to a recent study, 39% do not. And even if they do, they’re usually not very informative. While there are exceptions, most don’t tell you what happens to your sample after they analyze it or what happens to the data they extract from it.

It doesn’t stop there. What makes DNA data so exceptional is how it connects people to parents who never had a chance to give consent – who never even knew they would be involved. Scientists have shown they can trace 60% of Americans of European descent to their third cousin; soon, they say, they will be able to trace 90%. You can avoid genetic testing your entire life, and they will find you anyway.

“Since data subjects cannot know where or how their data is stored and used, a person who does should look out for their interests. “

In the wrong hands, this data could spread personal secrets, such as physical vulnerabilities, around the world and be used to prevent you from accessing bank loans, education, housing, disability insurance and long-term care. It’s currently illegal for health insurers and employers to discriminate against you based on your genes, but it’s hard to prove when it happens – and chronic disease studies show it does.

Few Americans realize how much money genetic testing companies can make with their data combined with that of other customers in large databases. When these subjects find out, they may feel exploited. They may feel like they weren’t sufficiently informed about what they were consenting to and begin to distrust the health care system as a whole, which can seriously undermine its ability to keep us all safe and secure. in good health.

The benefits of genetic testing for medical innovation are clear. If people avoid it out of fear or suspicion, they can deny scientists the data they need to make vital discoveries.

To address these concerns, Americans need protection from anyone who might use their genetic data for their own financial gain or access it for uses that could cause harm. Since data subjects cannot know where or how their data is stored and used, a person who does should look out for their interests.

The current practice of asking consumers to click ‘consent’ on a computer screen after displaying complex terms of use, which may not contain adequate privacy safeguards, if any, is clearly not sufficient. How can we consent to what we don’t understand or don’t even know exists?

On this data privacy day, we urge the new Biden administration to make genetic data privacy a priority by strengthening oversight and regulation. The autonomy to determine the use of our DNA is not simply a privilege. This is the very essence of individual rights and responsible public health.

About Christopher Easley

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