GENETIC TESTING KITS FOR HOLIDAY GIVING??—BEWARE OF PRIVACY RISKS, TEST VARIATIONS AND INCORRECT ASSUMPTIONS
New Survey Shows Significant Misunderstanding of Results and a Lack of Consumer Information and Privacy Protections
Washington, D.C. — Today, the Consumer Federation of America is releasing a national consumer survey demonstrating that the assumptions most consumers make about direct-to-consumer (DTC) genetic tests and what may happen with their personal information are simply wrong. “The survey confirms our concerns that consumers may not be getting what they think they are,” said Susan Grant, CFA’s Director of Consumer Protection and Privacy. On November 30th CFA released a report based on a study of six popular DTC genetic testing companies. As part of the study, Ms. Grant took the basic ancestry tests from 23andMe, Ancestry, FamilyTreeDNA, HomeDNA, LivingDNA, and MyHeritage. CFA staff analyzed the companies’ advertisements, website claims, marketing practices, terms of service and privacy policies, and researched applicable law. The study found that the results of these tests vary from company to company and are limited in ways consumers might not realize, important information is buried in the terms of service, and there are significant privacy concerns. To determine consumers’ knowledge about DTC genetic testing, CFA then conducted a national survey.
Over three-quarters (77 percent) of respondents had heard of DTC genetic tests, with more than two-thirds of respondents in each demographic having heard of the tests. Those who had heard of these tests were asked to answer eight true or false questions.[i]
1. The federal government must approve all direct-to-consumer genetic tests before they can be put on the market. Forty-four percent incorrectly said this was true. The Food and Drug Administration only requires pre-market approval for certain types of health risks tests, not for tests regarding ancestry, personal traits and general wellness.
2. Regardless of which direct-to-consumer genetic testing company you use, the results of a test about where your ancestors came from will be the same. Sixty percent incorrectly said this was true. The results of ancestry tests vary from one company to another because each company compares an individual’s genetic data to that of other customers in its database, using its own proprietary formula to estimate where the person’s ancestors likely originated.
3. The results of a direct-to-consumer genetic test for ancestry or health could change after you’ve received them. Only 50 percent correctly answered that this was true.The results of these tests can change as DTC genetic testing companies amass more data and as research provides more information.
4. Direct-to-consumer genetic health tests can determine if you will develop certain diseases. Sixty-six percent incorrectly said this was true. DTC genetic tests may indicate the possibility of developing certain diseases, but are not intended to be used for diagnosis because the results may be wrong and other factors, such as lifestyle and environment, can contribute to a person’s health.
5. Direct-to-consumer genetic testing companies can legally share your test results with other companies except for health insurers and employers. Less than half, 45 percent, correctly answered that this was true. Since federal law bars only health insurers and employers from obtaining and using individuals’ genetic data, DTC genetic testing companies can legally share customers’ genetic information with other types of companies for marketing and other purposes. Only a handful of states have laws that provide broader protections for access and use of this kind of information.
6. The results of direct-to-consumer genetic tests for ancestry include information such as the addresses where your ancestors lived, their occupations, and other details about them. Nearly half, 49 percent, incorrectly said this was true. This kind of information is not included in basic ancestry tests. Some DTC genetic testing companies provide access to historical documents as an upgrade or additional service, for an added charge.
7. The results of a direct-to-consumer genetic test will include a list of all of your living relatives based on your DNA. Again, nearly half, 49 percent, incorrectly said this was true. DTC genetic testing companies can only provide possible DNA matches to other people who have also taken their tests.
8. Direct-to-consumer genetic testing companies can give your data to law enforcement agencies without a court order. Only 41 percent correctly answered that this is true. Each DTC genetic testing company has its own policy for whether and under what circumstances it will provide customers’ personal information to law enforcement.
“It’s clear that consumers need better information about how these services work,” said Grant. “We also need to enact laws at the state and federal level to provide the limits that people believe already exist for sharing and using their personal information.” CFA’s report made several recommendations for DTC genetic testing companies and policymakers to improve consumer disclosures and protections.
“Before people buy these tests for themselves or as gifts, there are many things they should consider, including the limits of the information these tests provide, the possibility of results that are unexpected and unwelcome, and the privacy implications.” CFA has created tipsto help consumers weigh the benefits and risks of DTC genetic testing.
The Consumer Federation of America is an association of more than 250 nonprofit consumer organizations that was established in 1968 to advance the consumer interest through research, advocacy, and education.