UC Davis law professors discuss the bioethics of ancestry companies that sell consumer data for research and drug development
Large ancestry companies such as 23andMe and AncestryDNA have been processing consumers’ DNA for years to provide consumers with a deeper understanding of their family history. Within some of these ancestry companies’ terms of service, however, there are statements that require consumers to agree to the sale and distribution of their DNA for research and medical purposes. UC Davis Law Professor Lisa Ikemoto, whose areas of speciality include bioethics and health care law, was featured on 60 Minutes on Jan. 31 to explain the implications of agreeing to these companies’ terms of service.
“You have to look really, really carefully at the websites to find the agreements themselves and then you read through and they’re really long and they’re really detailed and the terminology is not perfectly clear, so it might be hard to understand what you’re consenting to, what you could opt out of,” Ikemoto said.
For Ikemoto, the idea of humans’ genetic material being used in technological advancements raises ethical concerns about who should have rights to that data.
“People are becoming sort of the source of raw materials that are used in science and so there are questions about who should have the say-so in bioethics terms,” Ikemoto said. “Who should have the control over those cells and tissues once they’re removed from their bodies? Can they be owned by somebody else? Can they be owned by the people who provided those cells and tissues?”
Law professor Alix Rogers, whose research focuses on new biotechnologies and regulating human biological materials, noted that ancestry companies are held to different ethical standards than medical companies.
“If the individual [was] signing up and giving their DNA to a medical study, for instance, we would have strict requirements around informed consent, and in these instances, we don’t,” Rogers said. “It’s sort of left a little bit more willy-nilly on, ‘How good is the informed consent—is it true informed consent?’”
Rogers said that oftentimes consumers of ancestry services tend to invest the same level of trust into ancestry companies as they would a healthcare provider, though she said these companies do not always make as much of an effort to get quality informed consent.
“You think that they’re looking for the individual’s best interest—a doctor has a duty to look after […] the best interest of their patient,” Rogers said. “They’re sort of existing in this liminal space where it seems like they’re kind of a healthcare provider, but they’re not, so that same duty doesn’t apply, and yet maybe some individuals who are engaging their services don’t quite understand that.”
Professor of Law Stacy-Ann Elvy, whose research focuses on how commercial law of privacy relates to emerging technology and human rights law, sees possible concerns in the privacy implications that consenting to ancestry services could have for consumers’ families.
“You’re essentially also providing genetic material, genetic information on everyone in your family, and these individuals didn’t consent to having genetic information disclosed,” Elvy said. “Notice and choice is a very important part of this issue.”
According to Elvy, another implication of consenting to these services is that there is no way to mend the damage caused by possible data breaches because genetic data is so highly sensitive.
“So, if for instance there is a cybersecurity incident, a data breach involving a credit card, or something to that effect, […] you can always get a new credit card number,” Elvy said. “Some things can be replaceable and changed and that’s not genetic data.”
According to Rogers, many ancestry companies make the promise of anonymizing and aggregating your genetic information, but it’s becoming increasingly easy to trace genetic information back to a person.
“When DNA sequences are sold, the assumption is often that you could never trace back through and figure out, ‘Okay, in these 15 sequences, this is John Smith,’ and increasingly we’re able to do that, and so that is troubling,” Rogers said.
Written by: Lyra Farrell — firstname.lastname@example.org