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Thread: Genetic Testing Firms Share Your DNA Data More Than You Think

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    Genetic Testing Firms Share Your DNA Data More Than You Think

    Genetic testing companies that trace customers' ancestry are amassing huge databases of DNA information, and some are sharing access with law enforcement, drug makers and app developers.

    Why it matters: At-home DNA testing kits are soaring in popularity, but many consumers who take the tests to learn more about their family trees may not realize how that data is being shared for other purposes.

    The big picture: What started out as a novelty for genealogists has gone mainstream. There are now more than 50 DNA-testing kit services on the market, estimates Carson Martinez, a health policy fellow at the Future of Privacy Forum.

    • MIT Technology Review predicts more than 100 million people may be part of commercial genetic databases within the next two years.
    • Amid controversies over internet companies' collection of personal data, millions are paying to hand over DNA samples to a largely unregulated industry.
    • Some worry law enforcement, employers or insurance companies could end up using that DNA information against them.


    Driving the news: This month FamilyTreeDNA came under fire for voluntarily giving the FBI routine access to its database of more than 1 million users' data, allowing agents to test DNA samples from crime scenes against customers' genetic information to look for family matches.

    • FamilyTreeDNA apologized for not disclosing the agreement to consumers. The company told the NYT that users can disable the "matching" option to prevent their data from being visible. Ancestry.com and 23andMe say they require a warrant or subpoena before they consider turning over data to law enforcement.
    • It's not the first time genetic data has been used in cold cases. To catch the Golden State Killer last year, police detectives compared crime scene DNA against publicly available genetic data to identify the suspect.


    Drugmakers also want access. Ancestry.com and 23andMe — the largest companies that, combined, have DNA data of 15 million users — both share anonymized genetic data with outside researchers and companies.

    • Last summer, 23andMe struck a drug-development deal with GlaxoSmithKline, and it's working on developing its own line of drug treatments.
    • Ancestry has worked with Google spinoff Calico to study human longevity.
    • The companies say they obtain customers' "informed consent" — or explicit permission — before DNA is used in scientific or medical research.
    • Kathy Hibbs, 23andMe's chief legal and regulatory officer, said that assembling large aggregated datasets of human DNA can speed up drug development. The company says 80% of its customers opt in to research programs.


    "It's not individual data that's interesting for research — it's the ability to look at large groups of people to see what's unique. It's the aggregate data, not individual data, that's meaningful."
    — Kathy Hibbs, 23andMe

    A firm called Helix acts like an "app store" platform that gives third-party software developers access to parts of customers' DNA data for apps and personalized services that consumers opt into separately. Helix has partnerships with around 25 companies. Fitness and wellness apps are among the most popular, said Elissa Levin, Helix's senior director of clinical affairs and policy.

    • For example, weight-loss app Lose It integrates genetic information to tailor diet and exercise recommendations.
    • Helix analysts work closely with third parties to provide privacy guidelines, but does not dictate their policies, Levin said.


    Personal DNA tests are used to help predict genetic risk factors for health complications. 23andMe offers FDA-approved genetic risk reports for inherited breast cancer and colorectal cancer.

    • The results may allow customers to manage their own health, but can also lead to revelations that are surprising or alarming.
    • "We're encouraging companies to provide education to consumers about the risks and benefits and unintended consequences of the results," said John Verdi of the Future of Privacy Forum.


    Reality check: Commercial DNA-testing services aren't specifically covered by federal privacy rules, such as HIPAA, because they aren't health providers or insurers.

    • They are subject to the FTC's protections around privacy disclosures, as well as some FDA standards for how data is used in drug and medical device research.
    • But protections can get murky when genomic data is used for human-subject medical research or for treatment, says Pamela Hepp, a health care attorney at Buchanan Ingersoll & Rooney specializing in data privacy.
    • For example, research using de-identified data in a clinical setting may not require participants' consent. But DNA data that is unique is arguably not capable of being fully de-identified and would still be personally identifiable, Hepp said. So use of such data — even if all identifying information is removed — may require consent, and it may even become part of your medical record.


    Last year, the Future of Privacy Forum worked with 8 leading DNA testing companies, including 23andMe, Ancestry and Helix, to establish best (but voluntary) practices for data use and security — as well as restrictions on marketing based on DNA data and allowing consumers to delete their data.

    • Yes, but: "Even if a consumer deletes their DNA information, that is only effective if the DNA hasn't already been shared," Hepp said. "This is new territory."
    • Also, "subsequent researchers may want to use genetic data for future investigations, making it difficult to keep participants abreast of the various uses of their genetic data," according to a paper published in the Mayo Clinic Proceedings journal last summer.


    The DNA services have grown popular without most consumers realizing that their data could be used for purposes other than genealogy, such as forensics, said Benjamin Berkman, a bioethicist at the National Institutes of Health, who wrote about ethical issues of using genealogy data to solve crimes in the Annals of Internal Medicine.

    • Not so long ago, serious concerns were raised about genetic research because of fears about potential discrimination by insurance companies and employers. In 2009, the Genetic Information Nondiscrimination Act outlawed discrimination on the basis of genetic information.
    • "There's still a lot of evidence that people are concerned about those things," Berkman said. "But we are gradually moving away from the hyper-sensitivity to the private nature of genomic data."


    The bottom line: Read the fine print before uploading your genetic data, Berkman said, and use care when interpreting the results.
    https://www.axios.com/dna-test-resul...88b0c0293.html

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    5 biggest risks of sharing your DNA with consumer genetic-testing companies

    1. Hacking

    Obviously, this is not a risk that the genetic-testing industry alone faces, but it is an industry that has a unique set of information on its consumers. And there was a recent hack in the space. More than 92 million accounts from the genealogy and DNA testing service MyHeritage were found on a private server, the company announced earlier this month. DNA data, specifically, was not breached, the company said. But a hack in this space is a concern, regardless.

    “Protecting customer data remains Ancestry’s highest priority,” a spokeswoman for the company said. “We have invested heavily in building strong data security, and we make ongoing investments to continuously strengthen our security measures.”

    2. Who may profit on your DNA? The answer: Not you

    One of the most compelling signs that consumers have a positive view of these companies is that a majority agree to let them share DNA with researcher partners. All of these companies make clear that they will not share your DNA with any third-party unless you explicitly consent to it, but as 23andMe data shows, the vast majority of consumers opt in — at 23andMe, more than 80 percent. Ancestry and Veritas do not provide data on the opt-in percentage.

    23andMe provides consumers the choice of opting into research conducted on behalf of academic, nonprofit and industry organizations. They also offer an option to consent separately to specific disease studies in which their DNA is used in conjunction with for-profit drug companies, such as the Parkinson’s disease research conducted with Genentech and the lupus and IBD research conducted with Pfizer.

    “If customers don’t consent, none of their data is shared,” a 23andMe spokeswoman said.

    Consumers seem to have made the decision that altruism is the proper course of action: If their DNA can help find a cause of, or cure for, a disease, they want to be part of that process. But it also means that one day a drug company may be bringing a drug to market based, in part, on your DNA.

    “People do think they are helping the world, helping society, even though they may not as an individual benefit,” King said. “But if your DNA helps develop a drug for a pharmaceutical company, there is nothing governing what they do. It could be a drug they sell at a high profit but doesn’t help the world become a better place.”

    Veritas Genetics CEO Mirza Cifric said what it learns from research becomes immediately available to consumers through updates to their own genome or publication that moves science forward. “Our primary interest is unlocking secrets that exist in the genome, not engaging pharmaceutical companies to develop drugs, although we see potential value in that,” Cifric said.

    Marcy Darnovsky, executive director at the Center for Genetics and Society, said this research process also means that data is shared with and passes through many partners, and in her opinion, no matter what the testing companies say, they can’t ensure what those partners are doing with your DNA.

    An Ancestry spokeswoman noted that the decision to share DNA for research is not irrevocable, and consumers can request to revoke that permission at any time through their account settings. But King isn’t convinced: “Quitting one of these services isn’t as simple as just clicking Delete. How do you verify that they’ve actually deleted your genetic profile or destroyed a physical sample?”

    3. Laws covering genetic privacy not broad enough, experts say.

    Many privacy experts are concerned that the only law currently covering genetic privacy, the Genetic Information Non-discrimination Act (also known as GINA) is too narrow in its focus on banning employers or insurance companies from accessing this information. Other than GINA, there really is nothing, King said.

    There are some select groups of Americans who receive insurance from the government that results in them not being covered by GINA: individuals who receive their insurance through the Federal Employees Health Benefits, the Veterans Health Administration, the U.S. Military (TRICARE), and the Indian Health Service. However, some of these programs have internal policies that prohibit or restrict genetic discrimination, such as The Office of Personnel Management (which oversees FEHB) and U.S. Military’s TRICARE insurance program.

    The genetic information space is in many respects still uncharted legislative territory, and consumers are taking these companies at their word, and they do state that protecting customers’ privacy is their highest priority. Ancestry reminds customers that “you own your data and you always maintain ownership of it,” and “you may request that we delete your data or account at any time.”

    Why might a lack of strict legislation come back to haunt consumers? Keep reading.

    4. Law enforcement knows these companies have your DNA, and they may want it. They’re already asking.

    Requests from law enforcement and courts for your data are already happening and also can be done under subpoena.

    Remember the Golden State Killer case that was recently cracked after decades? It was cracked with the help of DNA from a genealogy company. Catching a murderer is a good thing, but the ability of law enforcement to target your DNA through these testing companies is a big issue.

    Darnovsky noted that in the Golden State Killer case, law enforcement found their way to the suspect by using DNA from relatives. She said there is a lesson in this for consumers. “When you provide your genetic information to a DNA testing company, you are also providing information about those related to you — including distant cousins. When your relatives, including distant ones whom you may not even know, provide their DNA, they are also providing genetic information about you.”

    She also noted that while testing companies stress that DNA data is “de-identified” to protect privacy, data shared with researchers can be re-identified in many cases.

    Requests may also come from the federal government, including the State Department or U.S. Military. King said it is much more likely the federal government will want this DNA data for law enforcement purposes rather than to exploit any employer-employee loophole in GINA.

    All of these DNA testing companies explain this in their privacy statements, and 23andMe makes clear that it stands on the side of consumers. It says it will “resist” efforts of law enforcement.

    “Under certain circumstances, personal information may be subject to disclosure pursuant to judicial or other government subpoenas, warrants or orders, or in coordination with regulatory authorities. However, we use all practical legal and administrative resources to resist such requests.

    23andMe provides a transparency report on all requests made by law enforcement and government to date. Ancestry provides a similar report.

    King said that law enforcement has barely begun to test the power of the subpoena in this area, if at all, and so it’s really uncharted territory in the legal realm. But she said there is every reason to believe the companies will defend consumers in a manner similar to how Apple has fought government requests to unlock and unencrypt iPhones.

    “I think most companies approach this question from the judgment of, How much do we have to gain by violating our users’ trust? vs. How much do we have to lose by not cooperating with law enforcement?” King said. She added, “Tech companies (and potentially direct-to-consumer genetic-testing companies) tend to fight requests from law enforcement and force them to go through a legal process (formally getting a subpoena); on rare exceptions they will fight to quash those. I’m sure the DTCGT are all watching these recent cases of law enforcement uploading suspect samples directly to open DNA databases very, very carefully, especially how the public reacts. I actually doubt that many of them are going to be willing to cooperate with informal law-enforcement requests.”

    Darnovsky noted that in addition to civil liberty issues, there may be a racial component to be concerned about: “There’s great concern in the law-enforcement context both about civil liberties in general and about disproportionate impact on communities of color, because they are already disproportionately in contact with police.”

    23andMe has itself noted that the genetic testing industry remains challenged by a lack of diversity, and King said, “To the extent that poverty/low income is intertwined with the criminal justice system ... a focus on using these databases to identify criminals will create unease or distrust, especially among historically targeted populations,” King said.

    5. The company’s situation — or privacy statement — can change.

    Unintended consequences — not just acute incidents like hacking — are also inherent in this business model’s risks.

    Companies change — they are bought, sold and go out of business — and what happens to your data then? Darnovsky asked.

    In the current tech-sector regulatory landscape, privacy statements also change.

    “There are no limits on what these companies can do; they just have to state it in their privacy policies, which they can change at any time (though you may have to consent to it again),” King said.

    But here’s the good news: These companies do have an incentive to be on the consumer’s side. Without your faith in their motivations and actions, they won’t succeed for long.

    “The people I interviewed were generally uninformed about the potential risks and took a very optimistic view on how these companies would treat them in the future. With any luck they will be right,” King said.
    https://www.cnbc.com/2018/06/16/5-bi...companies.html

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    Another stack of reasons why not to give away your DNA.
    American by birth, made of parts from Emmingen, Baden-Württemberg.

    Der Familie Rentz seit 1535 - Meine Ehre heißt Treue

    Das Leben ist zu kurz, um billiges Bier zu trinken!


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    Quote Originally Posted by Herr Rentz View Post
    Another stack of reasons why not to give away your DNA.
    On Gedmatch, you're allowed to opt-out of the very police tracking system that busted one of their own, the Golden State Killer. Of course, however, they don't test your DNA, you're simply uploading files to run through admix calculators like Eurogenes (Elizabeth and I know the guy behind the project from Forumbiodiversity and Anthrogenica) and otherwise are able to match with people who've also uploaded theirs--if you check a box. I found my aunt's profile there and it was good to compare, along with distant cousins on both sides, some of whose surnames I recognized already.

    Anyway, I had no trouble simply downloading my file and deleting the DNA part of my Ancestry account so just keeping my family tree. Living DNA was easy to download from, but certainly took their sweet time responding to my formal request in writing that my DNA results were to be disposed of. I recommend that anybody interested, download their file and delete their commercial account ASAP (don't bother waiting for updates), then use free services like Gedmatch, Your DNA Portal and My True Ancestry.

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