The private equity firm Blackstone has purchased the DNA testing giant Ancestry.com for $4.7 billion. According to Reuters, Ancestry.com is the world’s largest provider of DNA testing, which includes finding family members as well as medical information.
DNA testing companies have marketed mightily to adoptees, in the U.S. and internationally. Because U.S. and international adoptees are often prevented legally from obtaining their original birth certificates (aka the basic human and civil right that we non-adoptees take for granted) and often have limited medical histories, they are wooed by the DNA companies to get around laws and thus access their own information. For some adoptees, it’s been wonderful; for some, it’s been complicated. For some, it’s a dead end of fourth and fifth cousins, and little help otherwise. “If I’m Adopted, Should I Have DNA Testing?” gives an overview by a genetics counselor. It was, however, written in 2018, and a lot has changed since then.
There have been increasing concerns about the preservation and sharing of DNA, including by law enforcement officials. In February, six months ago, Pennsylvania police had a search warrant to gain access to Ancestry.com’s database of 16 million DNA profiles. Ancestry refused. It’s possible that situations like this could go to the Supreme Court. In any case, other DNA companies do share their DNA data with police, scientists, marketers and others, and may not be making that reality clear to their customers.
For international adoptees, DNA testing is often the only way to gather information short of traveling to the country. Two Chinese adoptees who were first cousins found each other via DNA testing—and also found they lived 12 miles apart and were from the same orphanage in China. IamAdoptee did a series of posts about DNA testing for Korean, Chinese, and Colombian adoptees. Adoption Mosaic recently held a We the Experts panel (the experts being adoptees) about “Adoptee Liberation or Exploitation: Pros and Cons of DNA Testing.” The adoptees were from the U.S., China, Korea, and Colombia, and had a variety of perspectives about why they chose to use or not use DNA testing.
Some Black adoptees have expressed concerns about DNA databases that might be used by police, given the concerns over police violence against Black people and inequitable incarceration rates. For example, “One fear is its potential to place innocent people under police suspicion. In her book Inside the Cell: The Dark Side of Forensic DNA, New York University law professor Erin Murphy warns that the practice of searching for genetic relatives could cast wide nets of suspicion over families, and lead cops to test a person’s DNA despite no independent evidence linking them to a crime.” Some DNA companies retain DNA and share it in an unregulated way, which has significant current and potential ramifications.
One option for Black people is AfricanAncestry.com, which says this on its webpage:
- We do not maintain a database of customer information.
- We do not sell or share customers’ personal or genetic information.
- We do not provide customer information to law enforcement.
- We do not biobank your genetic material. All genetic material is destroyed at the lab.
AfricanAncestry.com describes itself this way: “the world leader in tracing maternal and paternal lineages of African descent having helped more than 750,000 people re-connect with the roots of their family tree.” It may be an option for Black adoptees from the U.S. and from Africa.
With Blackstone, a billion dollar corporation, now owning Ancestry.com, also a billion dollar corporation, the stakes around privacy and information have grown daunting indeed. For adoptees, DNA testing is a possible avenue to access relatives and medical history, but at what price?
More U.S. states need to allow adoptees access to their original birth certificates. Adoptees in Massachusetts are currently working on this, as are advocates in other states. Adoption agencies and lawyers need to insist that all available information provided about adoptees at time of placement is as accurate, thorough, and current as possible. Adoptive parents need to demand the same at placement. Knowledge of who your parents are, and an accurate medical history, should not be exceptional, costly, and arduous information to obtain.