In the midst of gift-giving season, U.S. Senator Charles E. Schumer is sounding the alarm on a popular item: at home DNA test kits. Schumer, today, is revealing that the kits are putting consumer privacy at great risk because DNA testing firms don’t always clearly disclose to consumers exactly what they are doing with DNA once it is sent in to their company. Schumer is calling on the Federal Trade Commission (FTC) to investigate and ensure that the privacy policies of all DNA test kits are clear, transparent, and fair to consumers, especially as these services become more and more popular.
“When it comes to protecting consumers’ privacy from at-home DNA test kit services, the federal government is behind. Besides, putting your most personal genetic information in the hands of third parties for their exclusive use raises a lot of concerns, from the potential for discrimination by employers all the way to health insurance,” said U.S. Senator Charles Schumer. “That’s why I am asking the Federal Trade Commission to take a serious look at this relatively new kind of service and ensure that these companies have clear, fair privacy policies and standards for all kinds of at-home DNA test kits. We don’t want to impede research but we also don't want to empower those looking to make a fast buck or an unfair judgment off your genetic information. We can find the right balance here, and we must.”
Schumer added, “There is no point to learning about your family tree if your privacy gets chopped down in the process.”
Many consumers purchase DNA test kits, from companies like MyHeritage, Ancestry and others to learn more about their genetics and ancestry, however, many don’t realize that their sensitive information may end up in the hands of many other third party companies. And in many cases, the varying Terms of Service of each and every company mean consumers cannot know what to expect or understand the consent they are giving for use of their data.
For example, AncestryDNA’s fine print tells consumers that by submitting their DNA to the firm “…you grant Ancestry and the Ancestry Group Companies a royalty-free, worldwide, sublicensable, transferable license to host, transfer, process, analyze, distribute and communicate your genetic information for the purposes of providing products and services.” Schumer said this kind of language is troubling because it clearly suggests a desire for firms to monetize the DNA data they receive. At the same time, it is so vague that consumers do not have any concrete understanding of to whom and for what purposes their data might be sold or used.
Schumer says these kinds of aforementioned concerns, both related to marketing and discrimination, demand an FTC investigation, especially because there are good things that can come from this kind of at-home testing that relate to genetic research. Schumer says we do not want to impede these advancements, but that we must establish a framework for this kind of service.
Over the past several years, DNA testing kits have become more and more popular. According to media reports, the DNA testing market was worth approximately $70 million in 2015 and is expected to rise to $340 million by 2022.This year, AncestryDNA announced it had reached 4 million users in its genetic database, where consumers find relatives, some of whom they did not know existed.
Schumer concluded, “The last gift any of us want to give away this holiday seasons is our most personal and sensitive information, so that is why we are asking the FTC to step in, take a hard look at this industry and ensure there are across-the-board protections to safeguard consumers and ensure good research continues.”