Kristeen Irigoyen-Hernandez aka Lady2Soothe Follow @OurVoicesEcho
“DISCOVER ANCESTORS. STRENGTHEN FAMILY TIES. UNDERSTAND YOUR LIFE.”
Aided by venture capital and a flood of savvy marketing, Ancestry LLC has grown to become the world’s largest DNA testing conglomerate. Since 2012, it has lured more than 9 million people to spit into tubes and add their genetic code to the world’s largest private database of DNA. It has also banked away the world’s largest collection of human spittle, numbering in the hundreds of gallons.
In the age of Facebook and Google, consumers seem comfortable surrendering their personal information to corporations which collect and convert non-revenue generating assets into sources of revenue. But Ancestry and other DNA testing companies have added an audacious tweak: Consumers are now paying to hand over their genetic code, their most sensitive individual identifier, to companies monetizing it far into the future.
Ancestry.com takes DNA ownership rights from customers and their relatives. Giving them your DNA sample does not just affect you, it also puts your family and relatives at risk. According to their legal contracts, you still own your DNA, but so does Ancestry.com. DNA and genetic data Ancestry collects may be used against “you or a genetic relative.” According to its privacy policies, Ancestry takes ownership of your DNA forever. Your ownership of your DNA, on the other hand, is limited in years.
By submitting DNA you agree to “grant AncestryDNA and the Ancestry Group Companies a perpetual, royalty-free, worldwide, transferable license to use your DNA, and any DNA you submit for any person from whom you obtained legal authorization as described in this Agreement, and to use, host, sublicense and distribute the resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known, or hereafter developed or discovered.”
Basically, Ancestry.com gets to use or distribute your DNA for any research or commercial purpose it decides and doesn’t have to pay you, or your heirs, a dime. Furthermore, Ancestry.com takes this royalty-free license in perpetuity (for all time) and can distribute the results of your DNA tests anywhere in the world and with any technology which exists, or will ever be invented. With this single contractual provision, customers are granting Ancestry.com the broadest possible rights to own and exploit their genetic information.
Terms also require customers to confirm that, “You understand that by providing any DNA to us, you acquire no rights in any research or commercial products that may be developed by AncestryDNA that may relate to or otherwise embody your DNA.” Essentially, you still own your DNA, but so does Ancestry.com. And, you can commercialize your own DNA for money, but Ancestry.com is also allowed to monetize your DNA for millions of dollars and doesn’t have to compensate you.
Even if you’ve never used Ancestry.com, but one of your genetic relatives has, the company may already own identifiable portions of your DNA. Buried in the “Informed Consent” section, which is incorporated into the Terms of Service, Ancestry.com warns customers, “it is possible that information about you or a genetic relative could be revealed, such as that you or a relative are carriers of a particular disease. That information could be used by insurers to deny you insurance coverage, by law enforcement agencies to identify you or your relatives, and in some places, the data could be used by employers to deny employment.”
The Ancestry.com Terms of Service also warns that genetic information in its possession can be used by state or federal law enforcement agencies “to identify you or your relatives.” With the rise of forensic evidence in criminal investigations, DNA is often considered incontrovertible evidence. To propel the use of DNA evidence in criminal investigations and prosecutions, the Federal Bureau of Investigation (FBI) operates the national Combined DNA Index System (CODIS) database.
Ancestry.com takes no responsibility. By consenting to the AncestryDNA Terms and Conditions, “you or a genetic relative” agree to hold the company harmless for any damages that AncestryDNA may cause unintentionally or purposefully.
In the event you or your genetic information cause harm, you agree to “defend, indemnify and hold harmless AncestryDNA, its affiliates, officers, directors, employees and agents from and against any and all claims, damages, obligations, losses, liabilities, costs or expenses (including but not limited to attorney’s fees).” And customers beware, “you may be liable to others as well as to us if your account is used in violation of the terms and conditions of this Agreement.” That means you could end up owing money to Ancestry.com, its attorneys, and others.
The final indignity for Ancestry.com customers is that they must waive fundamental legal rights by agreeing to mandatory binding arbitration. With the exception of intellectual property rights disputes and certain small claims, Ancestry.com customers must pursue their disputes through arbitration, rather than court. In arbitration, the established legal rules of discovery, evidence, and trial by jury do not exist.
Turning over your DNA means a loss of complete ownership and control. Ancestry.com customers should also know they’re giving up the genetic privacy of themselves and their relatives.
This information also applies to 23andMe and will also apply to any other DNA testing corporation.
As of Jan. 15, 2019 an ancestry report from 23andMe.com, pharmaceutical giant GlaxoSmithKline now owns your genetic identity. Human DNA has now become a commodity, with 23andMe the world’s largest database of genetic code serving as the “new frontier” for pioneering drug-makers. British pharmaceutical giant GlaxoSmithKline purchased a $300 million share in the genealogy company, which promises to tell you your ancestry in exchange for your DNA. But if people are concerned about their social security numbers being stolen, they should be even more concerned about their genetic information being misused. This information is never 100% safe. The risk is magnified when one organization shares it with a second organization. When information moves from one place to another, there’s always a chance for it to be intercepted by unintended third parties. As genetic profiling technologies evolve, 23andMe is serving as a translation service, turning living bodies into code that can be aggregated into big data. This big data represents big profit for big pharma, who can use it to create experimental drugs which can be marketed to consumers based on their genetic profiles. The FDA warns this includes an inherent risk of diagnoses and prescriptions based on false positives or false negatives for certain genetic traits.
23andMe can keep and sell its customers’ genetic information to others because consumers consent to the sale of their anonymous and aggregate information just by purchasing the product and agreeing to its privacy statement. The company can also sell deidentified individual-level data if the research consent document is signed.
They recently announced the drug company Genetech offered to pay up to $60 million to use its database to conduct Parkinson’s research. And the fact 23andMe can sell data puts a worrying spin on the proposed changes to consent for federally funded human research.
At the moment, federally funded researchers and private companies have the same standards for consent: If human biospecimens are not “identifiable,” they don’t have to ask for consent to use them for research.
Ancestry.com and 23andMe market their DNA kits with promises that tug at the heartstrings. Unless customers request otherwise, Ancestry adds people’s DNA data to its proprietary database, therefore, you are not just taking the test for you, you are taking it for the whole family. People must understand, turning over their DNA means a loss of complete ownership and control. Ancestry’s terms and conditions are long, and somewhat boring, but people should read them. They make a big deal of stating you own your DNA. But they are taking a worldwide, perpetual, royalty-free license to do what they want with your DNA and your actual genetic sample they keep in storage. Ancestry allows customers to request their DNA analysis be erased from the company’s database after results are received, and request destruction of their remaining biological sample. BUT it is a two-step process, and customers must read deep into the company’s privacy statement to learn how to do it. Requests for DNA data elimination can be made online, BUT customers MUST call its support center to request destruction of their biological sample.
However, future owners could change privacy protections, including Ancestry’s promise not to share personal data with insurance companies. Ancestry’s terms and conditions state “We have the right to modify these terms or any additional terms that apply to a Service at any time.”
ANCESTRY.COM was founded by a pair of Brigham Young University graduates in the 1990s and was one of the early internet start-ups allowing customers to build their family trees online, accessing troves of information the company assembled. Paul B. Allen, one of the founders said it makes sense a family-tree internet company would arise in Utah, where the Mormon church has long kept extensive family history records. “This is the mother lode of genealogical research”.
Thirty years later, Ancestry is still based in Utah but has mushroomed into a multinational company operating in more than 30 countries, pulling in $1 billion in revenue in 2017. Its headquarters in Lehi, south of Salt Lake City, is home to 1,100 of the company’s 1,600 employees. The building features a display of lanterns, descending through several floors, meant to resemble DNA strands.
To really grasp the company’s rapid growth, one needs to visit one of Ancestry’s contractor labs, where the company sends customer’s genetic samples for analysis. One of these labs is in La Jolla, Calif., owned by Illumina, a leading company in sequencing and genotyping DNA. The kits and spit tubes Ancestry sends to Illumina do not have people’s names or addresses which is the only identifying marker reconnecting the results with individual customers. Like other DNA testing companies, Ancestry uses spit for genetic analysis because its an easy way for consumers to provide their DNA. Saliva contains white blood cells and cells from the inner lining of people’s mouths. A line of workers remove spit tubes from the kits, scanning their bar codes and checking for defects. Illumina isolates the DNA, then goes through a multi-step process of “amplifying”, processing and turning it into a machine-readable code, the entire process takes about four days. After Illumina finishes its analysis, the results are sent back to Ancestry marked only with bar codes to prevent disclosure of customer identities. The remainder of people’s biological sample is returned to Ancestry’s custody where they use the code to analyze a customer’s ethnicity. Ancestry then generates an ethnicity estimate which is forwarded to the person. Ancestry not only stores people’s genetic data, but the raw DNA itself, how long it will be stored, is unknown.
Unidentified hackers last year accessed an Ancestry website, RootsWeb, compromising the sign-ins of 55,000 Ancestry customers who had the same log-in credentials with RootsWeb. The site has since been shut down. The incident received little attention but revealed how customers’ personal information could be accessed and exploited through Ancestry’s partnerships and acquisitions.
AncestryDNA, a subsidiary of Ancestry LLC marketing genetic testing, pledges to safeguard people’s private data. But the company has a history of changing the terms of its agreements with customers. In the most high-profile example, Ancestry in 2014 shut down MyFamily.com, a social networking site where more than 1.5 million users had posted family memories, photos and conversations. Numerous customers said they lost treasured family history because of inadequate notification from the company, which decided not to back up the data.
Ancestry claims to beat its competitors’ inaccurate analysis of a person’s ethnicity. But interviews with company officials reveal Ancestry has wide gaps in its ethnic markers for Asia and other sections of the world. Outside geneticists and anthropologists say Ancestry and other companies are making misleading claims about the accuracy of their ethnic analyses.
Most Ancestry customers consent to have their DNA results, in a de-identified form, shared with the company’s research partners in the pursuit of sciences, including finding cures to diseases. But Ancestry’s main research partner is a secretive Google offshoot called Calico Life Sciences, which is focused on ways to extend human longevity through biotechnology. Critics have labeled Calico a “vanity project” of several Silicon Valley billionaires who want to extend their own lifespans.
The U.S. government recently proposed revisions to the federal human subjects research regulations which would require federally funded researchers to get what is called “broad consent” from people to use their biospecimens (it is unclear what effect this would have on private/public collaborations). This would apply even if researchers won’t know who the specimens came from. Broad consent would include a general description of types of research which might be conducted with the biospecimen.
Human Rights Advocate, Researcher/Chronological Archivist and member in good standing with the Constitution First Amendment Press Association (CFAPA.org)