When Jessica Roberts’ father was lying in a hospital bed near death, she did something unexpected. She swabbed the inside of his cheek. Knowing he would soon pass away, Roberts wanted to be able to find out more about her father’s lineage. He was adopted, so having his DNA tested would be a good starting point.
With a vial of saliva (or in some cases a swab), and $80-$250, anyone can get a trove of information about their ethnic makeup, complete with maps, graphs and statistics, within about six weeks.
Roberts knows this field well. As director of the Health Law & Policy Institute at the UH Law Center and George Butler Research Professor of Law, she is an expert. Her research operates at the intersection of health law, ethics and social justice. Roberts answered a few common questions about direct-to-consumer genetic genealogy tests.
Why did you decide to test your father’s DNA?
Genetic genealogy testing companies can do really neat things, like potentially match you with your genetic cousins. They can do surname research looking at the Y chromosome, which travels with the paternal surname in our culture; so, among other things, I figured I might be able to find the last name of my father’s genetic parents and my paternal lineage.
How accurate are these kits? Do they work?
There is no one single gene that is only found in one ethnicity. There is not a gene that every member of an ethnicity has. Each company has its own methods, algorithms and data, and the results provided to consumers are probabilities based on the company’s data set. The larger the database, the more accurate the results will be.
Are there risks in finding out ancestry information or origins you weren’t expecting?
It can be a shock if you think you area member of particular ethnic group and your genetic tests say otherwise. I caution people about putting too much value in genetic information. Your culture is not your genes. Genetic genealogy tests are recreational, but they might give people the illusion of a clear answer of who they are and where they are from.
A lot of these tests tell you information about nationalities or countries of origin. How is that possible?
It’s not. Genes do not know national borders. These companies provide maps based on probabilities. It is showing you the probability of being from a geographic region; countries are often used to represent the different regions.
What should we know about providing our genetic information to a third party company? Is there a risk in that?
Sometimes genetic testing companies will share data with outside parties, like researchers or pharmaceutical companies. Different people have different thresholds for privacy. One person might not care too much that his or her data is being shared or used for research, while another person might care very deeply. Anyone considering genetic testing should read the terms and conditions carefully and decide whether the company’s policies suit their preferences.
The other popular direct-to-consumer genetic information involves your medical information, like your risk of developing Alzheimer’s, for example. Are the risks the same?
No. If you want medical information, I would encourage people to go through their physician instead of going through direct-to-consumer genetic testing companies. The FDA has allowed some of this genetic testing, but you don’t have the benefit of a genetic counselor to interpret those results.