By: Lisa Hoover
It’s probably not news to most of us that home DNA testing is a booming industry – NPR reports that data on 1.28 million people is contained in the one company’s databases alone (Stein, 2018). Most of us have a friend or family member who has taken a test. Many of us have probably also seen news articles raising privacy concerns for those who take these tests, but now evidence indicates that choosing to take one of these at-home DNA tests may have privacy implications for not only you, but also your family members.
NPR recently reported that a study in Science of one consumer DNA database indicated that researchers “could identify third cousins and more closely related relatives in more than 60 percent of people of European descent” and “it’s enough to have your third cousin or your second cousin once-removed in these databases to actually identify you” (Stein, 2018).
Scientists estimate that as these databases grow, “investigators will essentially be able to identify anyone in the United States within that ethnic background within a few years” (Sein, 2018). Researchers believe that “to identify an individual of any ancestral background, all that is needed is a database containing two percent of the target population” (Murphy, 2018).
Therefore, you may be identifiable if one of your relatives chooses to take the test, even though you never consented.
Why it Matters
The powerful privacy implications of family use of home DNA kits made headlines earlier this year when police used GEDmatch, a database of people who share their genetic code to find relatives and ancestors, to track a killer through his family tree. Police used this process to identify Joseph DeAngelo as the “Golden State Killer,” suspected of killing 12 people and raping 45 women between 1976 and 1986 (Selk, 2018).
DeAngelo’s DNA wasn’t in the database, but a relative’s was. They used that relative’s DNA for a partial match to DNA from a crime scene, which allowed them to focus on the relative’s family to find their suspect. This isn’t the only example of use of a relative’s DNA by the police, either (Selk, 2018).
While many might feel that this arguable breach of privacy is justified if it catches criminals, innocent people may get swept up in the process. Michael Usry was questioned by police as a suspect in a 1996 murder following a familial DNA search. After 33 days, he was exonerated after his own DNA was tested. Experts argue that cases like this, which show a “high rate of false positives” raise significant concerns about the use of this law enforcement technique (Koerner, 2015).
At least he was cleared, although he had to worry about it for over a month. But what happens when someone’s DNA is a match to DNA at a crime scene, but they are innocent?
We often think of DNA as being infallible, but Lukis Anderson knows very well that it is not. His DNA matched DNA found at a crime scene — on the victim’s fingernail, no less! — and Anderson spent over a month in jail on a murder charge before a defense investigator discovered that he had been in a hospital during the time of the crime and could not have been the murderer. So how did his DNA end up on the victim’s fingernail (Worth, 2018)?
After investigation, it was discovered that the paramedics that took Anderson to the hospital that night were the same paramedics who responded to the crime scene and checked the victim’s vitals. Somehow the paramedics transferred Anderson’s DNA to the crime scene. Through a quirk of fate, Anderson might have been convicted of murder and perhaps sentenced to death (Worth, 2018).
While familial DNA was not involved in Anderson’s case, it’s possible to imagine a scenario similar to his where it might be. We shed DNA everywhere we go, whether we are aware or not. Familial DNA matches allow police to tie that DNA to a crime scene without first finding us through traditional investigative techniques. To be sure, this helps increase the chances police will close cold cases, but does it also increase the chances of incorrect charges and convictions? The question should at least give us pause.
And, of course, this doesn’t address the myriad other reasons you might not want your DNA information (even through your relatives) to be quite so readily available. Your genetic code can tell a lot about your health information. “Here’s some potentially devastating information about your health and it’s in someone else’s hands,” according to Hank Greely of Stanford. “For a non-trivial percentage of us, there really are scary things in our genomes” (Fox, 2017). You may not want that information accessible to others, such as an employer or your insurance company.
Why it Matters to Libraries
Our patrons often turn to us for information, and genealogy research is often a hot topic at public libraries. Unfortunately, genealogy is often used in combination with DNA databases to provide law enforcement with the information needed to tie a familial DNA match to a suspect. In fact, the use of genealogical records was critical to tracking people in the Science study that claimed to identify people through their relatives’ DNA (Stein, 2018).
Therefore, librarians should be mindful of these issues when answering patron questions about DNA testing or genealogy, and librarians may wish to use this as a chance to educate the public during any public programming on genealogy. Being aware of the potential privacy concerns will allow us to make sure genealogical research continues to be fun and safe for patrons — and their family members.
The NIH offers a helpful page of existing regulations on genetic testing, and we may see more regulation in this area in the future. The major law currently regulating genetic privacy is The Genetic Information Nondiscrimination Act, which prevents discrimination by health insurers and most employers. However, it does not prevent discrimination by life insurance companies, and a federal bill introduced last year would exempt employers who offer workplace wellness programs, allowing them to offer better benefits to people with “good” genetic markers (Kelly, 2018).
Last year Senator Chuck Schumer called for a review of privacy issues surrounding the DNA testing industry by the Federal Trade Commission (Silva, 2018). However, as of August 2018 the FTC has not opened any investigation into the issue (Dipshan, 2018).
For now, this is a changing area privacy advocates will want to keep an eye on. And we all may want to re-think taking our own home DNA tests.
Dipshan, R. (2018) Giving away your genes: US laws’ blind spot with DNA data. Legal Tech News. Retrieved from https://www.law.com/legaltechnews/2018/08/02/giving-away-your-genes-u-s-laws-blind-spot-with-dna-data/?slreturn=20180919134814 October 19, 2018
Fox, M. (2017) What you’re giving away with those home DNA tests. NBC News. Retrieved from https://www.nbcnews.com/health/health-news/what-you-re-giving-away-those-home-dna-tests-n824776 October 19, 2018
Kelly, H. (2018) 5 things to know before you take a home DNA test. California State University. Retrieved from https://www2.calstate.edu/csu-system/news/Pages/5-Things-to-Know-Home-DNA-Test.aspx October 19, 2018.
Koerner, B. (2015) Your relative’s DNA could turn you into a suspect. Wired. Retrieved from https://www.wired.com/2015/10/familial-dna-evidence-turns-innocent-people-into-crime-suspects/ October 19, 2018
Murphy, H. (2018) Most white Americans’ DNA can be identified through genealogy databases. The New York Times. Retrieved from https://www.nytimes.com/2018/10/11/science/science-genetic-genealogy-study.html October 19, 2018
Selk, A. (2018) The ingenious and ‘dystopian’ DNA technique police used to hunt the ‘Golden State Killer’ suspect. Washington Post. Retrieved from https://www.washingtonpost.com/news/true-crime/wp/2018/04/27/golden-state-killer-dna-website-gedmatch-was-used-to-identify-joseph-deangelo-as-suspect-police-say/?utm_term=.2f38c4320092 October 19, 2018
Silva, Danielle. (2018) Senator calls for more scrutiny of home DNA test industry. NBC News. Retrieved from https://www.nbcnews.com/news/us-news/senator-calls-more-scrutiny-home-dna-test-industry-n824031 October 19, 2018
Stein, R. (2018). Easy DNA identifications with genealogy databases raise privacy concerns. National Public Radio. Retrieved from https://www.npr.org/sections/health-shots/2018/10/11/656268742/easy-dna-identifications-with-genealogy-databases-raise-privacy-concerns October 19, 2018.
Worth, K. (2018). Framed for murder by his own DNA. Wired. Retrieved from https://www.wired.com/story/dna-transfer-framed-murder/ October 19, 2018
Lisa Hoover is a Public Services Librarian at Clarkson University and an Adjunct Professor in criminal justice at SUNY Canton. In addition to her MLS, Lisa holds a JD and an MA in political science. She began her career as an editor and then manager for a local news organization, adjunct teaching in her “spare time.” She teaches courses in criminal procedure, criminal law and constitutional law. She is passionate about 1st Amendment issues. She recently began her career as a librarian, starting at Clarkson University in June 2017 teaching information literacy sessions and offering reference services. Lisa and her husband Lee live in Norwood, New York with their cats Hercules, Pandora and Nyx and pug-mix Alexstrasza (Alex). Find her on Twitter @LisaHoover01.