Pricing/Disclosures

Are Consumers Getting What They Think They Are with Genetic Testing?

New Study Highlights What People May Not Realize About Direct-to-Consumer Genetic Tests

 |  Press Release

Washington, D.C. — Today Consumer Federation of America released a new report, Marketing Direct-to-Consumer Genetic Testing: Are Consumers Getting What They Think They Are? It examines the claims direct-to-consumer  (DTC) genetic testing companies make for these services, the information they provide to consumers about them, the variance of results from one company to another, the up-selling that occurs, and the companies’ terms of service and privacy policies. “With the holidays coming up and DTC genetic testing companies promoting their services as the perfect gift, we wanted to help educate consumers about the benefits, limitations, and risks of these tests,” said report author, Susan Grant, CFA’s Director of Consumer Protection and Privacy. Nick Roper, Administrative and Advocacy Associate at CFA, assisted her with the research.

Conducted with a grant from the Rose Foundation, the study focused on six companies: 23andMe, Ancestry, FamilyTreeDNA, HomeDNA, LivingDNA, and MyHeritage. In order to compare the results, CFA’s Grant took the basic ancestry tests from each company. “We found that there’s much about these tests consumers may not realize,” said Grant. “They need to be better informed and better protected.”

What the CFA Study Found

  • The results of ancestry tests are not 100 percent accurate, vary from company to company, and may change over time.
  • Access to historical records, if offered, is extra.
  • DTC genetic health tests may be helpful but are not conclusive.
  • The limitations of ancestry and health tests aren’t always made clear.
  • Warnings about unexpected results may not be easy to find or provided at all.
  • DTC genetic testing companies encourage individuals to participate in research.
  • Up-selling is a common feature of DTC genetic testing services.
  • Customers may not realize their personal information could be shared with others.
  • Customers’ personal information may not disappear when they close their accounts.
  • Most DTC genetic testing companies restrict consumers’ rights and recourse.

“Consumers might be surprised to know that most DTC genetic tests are not reviewed by the government before they’re marketed to confirm the claims made for them, their accuracy, or their validity,” said Grant. “There is a lot of helpful information on DTC genetic testing companies’ websites about genetics and how their services work, but we’re concerned that not many consumers will delve into it and assume they’ll get more detailed and conclusive results than they actually will.”

Recommendations

On the basis of the study, CFA made these recommendations:

 DTC genetic testing companies should refrain from making specific accuracy claims.

  • The Federal Trade Commission should study disclaimers in television advertisements.
  • Important information should not be buried in companies’ terms of service.
  • Key information about DTC genetic tests should be provided in a standardized format.
  • Customers should have control of marketing for additional products and services.
  • The terms of free trial offers should be provided before the enrollment page.
  • Information about privacy should be prominent and easy to read.
  • Strong privacy protections should be enacted in the states and at the federal level.
  • Genetic samples should be automatically destroyed when customers close their accounts.
  • Congress should prohibit “forced arbitration” in all consumer contracts.

In conjunction with the report, CFA released tips for consumers, 9 Questions and Answers about DTC Genetic Testing.  The full report is here. A shorter version of the report is available here.