Americans unwittingly subject themselves to genetic discrimination

by | Jul 26, 2017 | Opinion

By Deborah Peel

Deborah C. Peel, MD, is founder and president of Patient Privacy Rights, a non-profit human and civil rights organization.

Millions of Americans are using home DNA testing kits to discover their ancestry or uncover their risk of developing certain diseases.  Unbeknownst to them, testing companies are selling or giving away the personal genetic information gleaned from these kits.

This information, though theoretically anonymous, can easily be traced back to specific individuals. In the wrong hands, it could be used to discriminate against or even persecute law-abiding citizens. Patients deserve stronger protections to prevent such abuse.

Genetic testing companies bury disclosures about data sharing in their user agreement forms.

Invitae is a particularly egregious offender. The firm’s consent form promises patients that their sensitive genetic information “will NOT be used in FOR PROFIT research.”  But the form conveniently fails to mention that Invitae donates the data to the ClinVar public database — where it and other companies can use the information to profit.

Companies say they strip genetic test results of personally identifiable information before they share it. Indeed, they’re required to do so by the 1996 Health Insurance Portability and Accountability Act. People’s names, addresses, and other identifying details cannot be included in the shared files.  Sounds good, but it doesn’t work like that.

The scrubbed files still aren’t anonymous — not by a long shot. With today’s technology, tracing a genetic sample back to a specific patient takes little more than some Google searching.  A scientist at MIT recently took five randomly selected genetic samples and identified the donors in just a few hours. He even identified nearly 50 of their family members.

Employers and insurance companies could use this power for nefarious purposes. If an employer knew a job applicant had a health condition that would make him likely to miss work, would the firm extend an offer? In a post-Affordable Care Act world, would insurance companies sell a policy to someone at high risk of cancer?

Federal laws have attempted — and failed — to address such hidden corporate discrimination. Under the Genetic Information Nondiscrimination Act of 2009, employers and health insurance providers are not allowed to discriminate against people based on their genetic information unless it happens to already be part of their electronic medical records.

GINA is riddled with loopholes. It doesn’t cover disability or life insurance, or protect people serving in the military. It also doesn’t apply to small businesses.

Even these feeble protections are under assault. The Preserving Employee Wellness Programs Act, a proposed bill under consideration in Congress, would allow employers to penalize workers and their families who don’t submit to genetic tests.

For a solution, policy makers could look to Europe. The EU’s new General Data Projection Regulation ensures individuals have the right to control personal information and imposes severe penalties on corporations that violate patients’ privacy.

Our genetic code is a treasure trove of identifiable personal information. When testing companies make it readily available to outsiders without patients’ knowledge or meaningful informed consent, they expose them to a host of threats. To prevent rampant discrimination patients need far stronger protections for their genetic information.

For more stories like this subscribe to our print or e-edition.

0 Comments

Related News

Rural America needs sound, predictable tax policy

Rural America needs sound, predictable tax policy

They say that nothing is certain in life ex­cept death and taxes. While those two certainties are undeniable, we need to make sure that family-owned busi­nesses, including farms and ranches, aren’t taxed to death. Texas boasts more than 248,000 farming and ranch­ing...

read more
Absent lawmakers stymie special session

Absent lawmakers stymie special session

Nearly 60 Texas House Democrats left the state last Monday for Washington, D.C. in an effort to stop passage of a Republican-led elections bill. This in effect blocks all legislation since the House doesn’t have a quorum present. As the Austin Ameri­can Statesman and...

read more
We’re global now

We’re global now

No matter how hard we try, we really can’t avoid one another. We live in a world where what takes place some­where else on the globe has a very good chance of affecting us, along with many others. The pandemic, of course, is a useful – if sobering – ex­ample. A virus...

read more
Texans urged to roll up their sleeves

Texans urged to roll up their sleeves

Gov. Greg Abbott and other Texas leaders are rolling up their sleeves to get the COVID-19 vaccine and to encourage the public to follow suit. “I will never ask any Texan to do something that I’m not willing to do myself,” Abbott said before getting vaccinated at a...

read more
Yes, Virginia, There Is a Santa Claus

Yes, Virginia, There Is a Santa Claus

Frances Pharcellus Church – New York Sun – 9/21/1897 “DEAR EDITOR: I am 8 years old. “Some of my little friends say there is no Santa Claus. “Papa says, ‘If you see it in THE SUN it’s so.’“Please tell me the truth; is there a Santa Claus? “VIRGINIA O’HANLON.“115 WEST...

read more
Get your flu shot, governor says

Get your flu shot, governor says

While scientists race to develop a CO­VID-19 vaccine, Texas Gov. Greg Abbott is urg­ing everyone to get a flu shot. Texans need to do their part to keep moving forward the state’s recovery from the pan­demic, the governor said. Last week, he also eased restrictions...

read more
Pandemic messes with Texas, prompts new message

Pandemic messes with Texas, prompts new message

Even during a pandemic, it’s best to not mess with Texas. Texas Department of Trans­portation officials noticed more personal protective equipment -- face masks, wipes and gloves -- on the side of roads and high­ways, so they called in the big guns for a new round of...

read more
High-tech Lincoln Logs turn heads in Texas

High-tech Lincoln Logs turn heads in Texas

Trees are almost as old as dirt in the con­struction industry, but they’re new to Texas in the form of the state’s first mass timber office building. The Texas project generat­ing the buzz is The Soto, which opened last week at Eighth and Broadway streets in San...

read more