If you send a saliva sample to 23andMe, a private DNA genetic testing and analysis company, to learn more about your risk for Parkinson’s, Alzheimer’s or your ancestry, you should also be aware of how your personal information could be shared, according to Dr. Katherine Drabiak.
Drabiak, a JD and assistant professor in the USF College of Public Health’s Department of Health Policy and Management, said the company can share and use your data for numerous other uses after you see your test results.
“Your information could potentially be used by a number of additional entities, including data brokers, employers, health insurers, and law enforcement subjecting you or your family to shame, discrimination, or criminal investigation,” Drabiak said.
In her research, “Caveat Emptor: How the Intersection of Big Data and Consumer Genomics Exponentially Increases Informational Privacy Risks,” published in Health Matrix: Journal of Law-Medicine, Drabiak highlights how 23andMe has revolutionized the model for both genetic testing and health care research, becoming one of the largest genotype-phenotype biobanks.
“Unlike research that occurs in a university or research hospital, federal laws regulating the privacy of medical information and requirements for human subjects research don’t apply to 23andMe all while doing so outside of federal law,” Drabiak said
According to the National Institutes of Health, a genome is an organism’s complete set of DNA, containing all of the information needed to build and maintain that organism.
“Scientists want to learn more about gene sequencing and the genome to understand how genes impact risk of disease, to develop screening and diagnostic tests, and develop tailored treatments,” Drabiak said.
However, Drabiak said that when companies sell these tests online, it eliminates the health care provider as a person to interpret results in context and discuss other potential risk factors involved.
“Legal scholarship in this area has already noted questions relating to genetic test accuracy and validity —does the test actually work to predict risk of disease?” she said.
According to Drabiak, our individual genomic sequence consists of the most sensitive and personal of information and consumers should exercise caution when submitting their DNA to consumer genomic companies with a clear understanding of what their privacy rights consists of once the DNA has been submitted.
She also said that if individuals are interested in knowing more about genome sequencing or genetic testing, they should be aware that no test is 100 percent accurate.
“Many laboratory developed tests commonly used by physician offices have not been FDA approved, so there is not strong regulatory oversight of whether the test will provide you with the correct result—the FDA is in the process of changing this and has taken some steps to regulate the tests that 23andMe sells,” she said. “Some people believe that information like carrier testing is power, and you can use the information to make positive changes and plan for future health conditions.”
While there are positive implications of obtaining your genome sequencing or genetic testing, Drabiak urges the public to remain aware of how their privacy rights may be relinquished.
“If you decide to obtain a test from 23andMe, be aware that the company will keep your genetic information, along with numerous other pieces of information about you, like your name, email, social media profiles, and GPS on file and may use it for other purposes like advertising, research, and potentially sell it in the future,” she said.
Drabiak said that these types of tests are only one piece of information in the puzzle of risk for many common diseases.
“Genetic information can be a tool in planning health decisions, but should not be a certificate for a self-fulfilling prophecy,” she said. “Consumers should also take the time to discuss any results with their health care provider and a genetic counselor prior to making decisions based on that test result.”
If consumers want more information on what the ‘fine print legalese’ actually says, Drabiak said, they are free to contact her at firstname.lastname@example.org.
Drabiak, Katherine. (2017). Caveat Emptor: How the Intersection of Big Data and Consumer Genomics Exponentially Increases Informational Privacy Risks. Health Matrix: Journal of Law-Medicine, 27, 143, pp. 1-33
Story by Anna Mayor, USF College of Public Health