Jeff Hettinger. (Photo: Lynsey Weatherspoon, for the United States today)

DNA testing is about unlocking secrets. But sometimes the surrender of saliva may also mean surrendering some privacy – yours or someone else's.

"I think people need to be prepared and warned that they can figure out something that can make them very unpleasant," said Jeff Hettinger, one of the growing numbers of people who submitted a selection and discovered a sibling he never knew existed His father had never told him.

DNA testing from similar leading services 23andMe and Ancestry have always boiled down to risk and reward, a fascination and curiosity about one's roots and / or predispositions to disease, balanced against ghosts around privacy, security and safety, the possibility of one difficult or identity changing discovery.

And yet, concerns about data breaches or an overreach by law enforcement have made some people reluctant to voluntarily spit into a tube or take a swab of the cheek, although this popular pastime continues to grow.

Could anyone steal my identity from DNA details?

Meanwhile, frequent reports of database scams in all areas of technology and business are likely to pause for people wondering about genealogy landing in their hands to identify thieves and scams. Searching for dependent relatives also means that you or your data must be exposed to some degree so that you can be found in turn.

A year ago, the MyHeritage test service confirmed a breach of email addresses and "hashed" or encrypted passwords on more than 92 million users who came up on a private server last October.

The company's then information security officer Omer Deutsch said that no other sensitive data, including family trees and DNA, was compromised since such data is stored on separate systems.

Still the episode heard the alarm bells.

"We haven't really seen any reporting about a security breach involving the genetic data of US customers with any of these great ancestors or health test companies," Hazel says. But "when the databases grow in size, they represent an ever-valuable target for potential hackers or others who may want to access that information."

Nevertheless, Hazel and others believe that the greater risk of privacy and security is more likely not to come from genetic data, but from any other information found on the Internet, including social security numbers, passport information, financial records.

"If anyone wanted to work with you to identify theft, there are many easier ways to do that then, to try to figure out your grandparents," said David Nicholson, co-founder of Living DNA testing service in the UK [19659029] When police use these DNA databases

privacy managers have also flagged major concerns about the use of DNA by law enforcement.

The DNA forensics has helped solve decades of cold cases, which in particular leads to the arrest of the suspected "Golden State Killer" in California.

Investigators were able to uncover clues through the public database GEDMatch, which hosts data subjects as voluntary uploads from private test services as a way to find matches with potential relatives who tested their DNA elsewhere.

However, the concern is that by allowing police authorities to wander around such DNA databases, a legal shadow can be thrown over innocent family members, some of whom never even sent DNA everywhere, much less giving their blessing to being sought by the police.

"You decide to contribute DNA to one of these services, and by default you include your parents, your siblings if you have someone, your children if you have someone or your future children, and future nieces, nephews and everyone else, says Jen King, privacy director at Stanford Law School's Internet and Society Center.

DNA testing: The best companies offer testing to learn about your family

Fami Ly TreeDNA met a setback earlier this year, confirming that it collaborated with the FBI on Crime Solution.The authorities were able to set up profiles on the site and hoped to match DNA samples collected from crime scenes. [19659029] But I did not register this …

Family TreeDNA later changed its privacy policy so that users could opt out so that their DNA could not match such profiles.

GEDMatch recently changed It now requires people to state specifically whether they will allow the information to be shared with law enforcement.

"Before that time, we had always warned our users in our terms of service that our site could be used by anyone for purposes other than family issues," says co-creator Curtis Rogers, who insists that there are many misunderstandings about GEDMatch.

"Criminal suspects are not identified in our database," Rogers says. Rather, "genetic genealogy is just the beginning of a long-lasting process that will ultimately lead to a person or people of interest. Law enforcement still needs to make a full investigation, often with a traditional DNA test, before they can mention a suspect and arrest. "

Such surveys may involve social media, public records, family tree, newspaper articles, cemetery records and property records.

Rogers adds that the family history's surfaces match, not the DNA itself, of which raw data is encrypted and used to determine these battles.

Ancestor DNA can reveal where your family roots. For his part, Ancestry, who has sold more than 15 million DNA kits, insists on an application letter or court order whose investigators are requesting DNA data on a customer, said Secretary Leader Eric Heath. Even then, the company can challenge the order. If that were to happen, Heath says, it will notify the customer, unless it is determined by the courts.

The reality is such requests are rare.

In its Transparency Report 2018, Ancestry said it received only 10 "valid" queries from the police for user information. It provided information on 7 of these requests, all related to surveys involving the abuse of credit cards, fraud and identity theft. The report indicated that Ancestry did not receive any valid information requests related to genetic information from a member, and the company did not direct such information to law enforcement.

It was added that by the end of last year, Ancestry had never received a classified request related to the national security laws of the United States or other nations.

In its own transparency report, 23andMe said it did not receive such a national security request.

Promoting privacy around DNA

Last year, ancestors, 23andMe, Helix, MyHeritage, Habit, African Ancestry and Living DNA joined the nonprofits The Future of Privacy Forum around a set of best practices for consumer genetic testing services. Among them: Companies agreed to promote transparency while giving consumers control over how the data is collected, opened, corrected, used in research and deleted.

Around the same guidelines, Ancestry, 23andMe and Helix formed earlier this month the Coalition for Genetic Data Protection to lobby "for affordable and uniform privacy regulation that will ensure responsible and ethical management of each person's genetic data."

"We understand that trust in users is critical to the success of the business," says Heath of Ancestry.

Heath recommends consumers to consider this or the DNA service to read the terms and conditions of privacy posted on each site, something people usually ignore or have trouble understanding on most sites.

"In as much as people are freaked out about DNA, this may be one where it would need you to read these documents," he says.

Vanderbilt's Hazel agrees. [19659006] In 2017, he researched the policies of 90 companies in DNA space. The results were across the map: 40% also had no policy available to consumers on their website or policies that did not even mention genetic testing or genetic data. Among the companies that themselves had a visible policy, some boiled down to a vague sentence or two, although Hazel notes that 23andMe posted a far more extensive if it is often difficult to understand the policy.

Do you know who you are doing [19659013] His research also pointed to a large subset of companies that allow surreptitious genetic testing where people could send DNA samples that were not their own – can be collected by a spouse's underwear to catch the partner to cheat or to decide to determine parents' parents. 19659006] (A Google search for "adultery testing DNA" draws up a number of these companies.)

Nicholson of Living DNA also encourages consumers to check the company's privacy policy. He says companies that can sell DNA testing at a much lower cost compensate by trying to make money from the data.

"Looking for a service as cheap as possible, but (one where) can your data be shared or sold? Or are you looking for a company (like ours) where you can pay a little more, but that the data is private, safe and safe? "Live DNA test packages cost between $ 99.

Even though he has not taken any steps to pass the secrets of his unknown half-brother, Hettinger has no other thought about his 23andMe test. "I still want to do that, and I still want to encourage others to do so," said Atlanta's 49-year-old.

Tracking of the family and health roots via DNA can provide rich rewards. Just be sure that these rewards match your tolerance for risk, privacy, and unpleasant surprises.

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