Will genetic testing companies invade your privacy?

DNA collection kit for home genetic testing. Sarah Weldon/Shutterstock)

Democratic Senator Chuck Schumer called on the Federal Trade Commission to investigate the privacy policies of domestic DNA testing companies.

These companies, including 23andMe, Ancestry DNA and MyHeritageDNA, promise consumers the chance to learn about their ancestry and genetic health risks using simple cheek swabs and mail-in kits. However, the security and privacy of the resulting genetic sequences is not always clear, and there are few laws governing the companies' actions, said medical ethics experts, who praised Schumer's efforts.

Genetic testing companies sell their test results to pharmacology companies and third-party laboratories, said Peter Pitts, president of the Center for Public Interest Medicine. There are no names or other identifying information in the data, but truly anonymizing DNA is a difficult task — researchers have found that comparing anonymized DNA databases to public records can reveal the names and addresses of the people behind the genetic sequences. , Pitts said.

This information has some benefits, Pitts told Live Science, such as developing personalized medicine. But with few safety measures in place, these pitfalls are looming.

"If used correctly, it can lead to good outcomes for patients, but when there is an opportunity to abuse or make money, criminals absorb it very quickly," he said. [Learn the 10 Most Destructive Human Behaviors]

Anonymization and Aggregation

“At-home genetic testing companies have different privacy policies. Typically, these policies require customer consent*** Share personally identifiable data, but generally allows the sale or sharing of anonymized DNA information, which has had names or other identifying information removed, or aggregated DNA information, which includes statistical data such as risk for specific diseases.

< p> Both types of information sharing can be worrisome, says bioethicist Art Caplan of New York University School of Medicine.

Anonymous DNA doesn't necessarily have to be so anonymous because genes are inherently It is the most identifying information of all. A 2013 study published in the journal Science used two publicly available genealogy databases and found that 12 to 18 percent of the time, researchers only identified genes from theirs. Genetic data can correctly discover people's last names. If researchers know a customer's last name, year of birth, and state of residence, they can comb through the database and narrow down the number of possible genetic profiles to just a few dozen. p>

Revealing a target's identity in these genealogy databases can also identify their genetic relatives, which is another problem with genetic data: Your genetic sequence is not unique to you, Kaplan said. Genetic information may reveal information about family risk for HIV 7 diseases you can get from genetic testing, Kaplan says "It may also start to affect your ethnic group," he told Science of Life".

Genetic testing companies have very small databases of ethnic groups, which are few in number in the United States. Caplan said test accuracy may be skewed among those groups, including Korean Americans, Vietnamese Americans and Filipinos. At the same time, if a group is tested in detail, it could make them appear to be at high risk for a specific disease simply because the data exists for one race but not another. Kaplan said this is the case for Ashkenazi Jewish women, who have been shown to be at greatest risk with two breast cancer genes, BRCA 1 and BRCA 2. But he said that's partly because of the Ashkenazi's unique ancestry, whose DNA has been investigated in detail. It's possible that other races are at higher risk and just haven't been tested, Kaplan said, adding that Eide went into great detail. In that sense, Caplan said, the aggregated data collected by companies like Marko has the potential to mislead or even produce a kind of "genotyping," and others because there aren't many rules limiting the work of domestic genetic testing companies. Pitts said companies often promise data security in privacy statements, but when they sell information to third parties, consumers have no way of knowing who those third parties are or what their security levels might be.

Similarly, Kaplan said, if a company itself is sold, its privacy policy can be overhauled.

"When I sent my DNA to 23andMe or agreed to give it to Columbia Medical School, there was nothing binding about, well, it would always be anonymous," he said.

The consequences of getting genetic information into the wrong hands can be scary, both Kaplan and Pitt said. There is a law, the Genetic Information Nondiscrimination Act (GINA) of 2008, designed to prevent insurance companies from denying coverage to healthy people based on genetic predispositions and to prevent employers from using genetic information to make hiring, firing or promotion decisions. Kaplan said Gina had a vulnerability. It does not apply to companies with fewer than 15 employees, nor does it apply to schools. Nor does it apply to life or disability insurance. A recently introduced bill in the U.S. House of Representatives, House Bill 1313, would overturn some of Gina's workplace protections and allow workplace wellness programs to limit rewards for employees who refuse to provide genetic data.

"If we don't like racial profiling at airports, we're going to hate genetic profiling in the workplace," Pitts said.

Specific rules could help, Pitts said. Including severe penalties, even jail time, for hacking or stealing genetic information. Kaplan said tough penalties should also be enacted for anyone who attempts to submit for DNA testing without the subject's consent. At the same time, he said the conditions consumers agree to when giving up their data should be permanent, even if the data If the company changes hands, the genetic information won't go anywhere, so it's time for the law to catch up with the technology. "It just means thoughtful regulation and thoughtful consumption," he said. ”