At-home genetic tests have increased in popularity. So much so that some, like 23andMe, have gone public. Professors Trina Jones and Jessica Roberts, in their article Genetic Race? DNA Ancestry Tests, Racial Identity and The Law, 120 COLUM. L. REV. 1929, 1930 (2020) observe that almost thirty million individuals worldwide have taken DNA ancestry tests and the number was expected to exceed one hundred million by 2021. They aptly note that “[w]hile some observers view DNA ancestry tests as purely ‘recreational,’ these tests can have a powerful effect on both the individuals who take them and on society as a whole.” This naturally leads to the question: what are the public health implications of these at-home genetic tests, and should public health take notice?
The most common concern is, of course, genetic privacy. The genetic companies own or harbor millions of people’s DNA. In January 2022, Consumer Reports (https://www.consumerreports.org/dna-test-kits/privacy-and-direct-to-con…) reviewed the privacy policies of five DNA companies to see what they say happens to consumers’ genetic information. They found that the genetic companies provide ancestral and family-tree DNA information, health information, diet and lifestyle advice based on DNA test results, or some combination of these services. Additionally, they also found that direct-to-consumer genetic testing companies employ policies and practices that unnecessarily compromise consumers’ privacy.
Responding to privacy concerns, the companies have often argued that they comply with the law in protecting consumers’ private information: that once an individual sends his or her DNA to the company, by checking the box in the privacy page, the individual gives consent to sharing his or her information with third parties. This brings to mind Moore v. Regents of the Univ. of California, 793 P.2d 479 (Cal. 1990), where the California Supreme Court addressed the rights of an individual over his own cells/tissue. In that case, Mr. John Moore, a patient, sued his physician, the hospital as well as the university regents for patenting his cell lines without informing him. Moore alleged conversion and lack of informed consent, among other causes of action. On the conversion claim, the Court found in favor of the hospital, noting that an individual has no right over his discarded tissues. Similarly, once an individual sends his or her DNA to the genetic companies, does he or she have any rights? The answer is mixed. Some states have passed genetic privacy laws that strengthen consumer protections. See for example, The law of genetic privacy: applications, implications, and limitations, 14 J. LAW & BIOSCIENCES 1, 12 (2019).
A second concern is the conflation of illness and ancestry. Many of the consumers who give their DNA to genetic companies, or buy the at-home genetic testing kits, are not doing it because of any diagnosed illness; rather, the consumers are seeking information on origins and ancestry. Interestingly, the merger of 23andMe and Richard Branson’s VG Acquisitions Corp. was driven, in part, by using a patient’s DNA as the basis for personalized healthcare and therapeutic development through human genetics. Several questions arise here. First, if the consumers are looking for information on their ancestry, are they patients in the true sense of the word? Second, if they are patients, what kind of health data is being generated from their DNA tests? What happens once they learn about their genetic risks? Can the consumer/patient then seek treatment, change behaviors or change his or her health plan to cover the risks? Third and most pertinent, public health relies on surveillance. Since this data is private, can it be accessed by public health authorities?
Besides conflation of illness and ancestry, there is a historical pattern of conflation of race and disease here in the U.S. Professors Jones and Roberts write that “it is worth emphasizing that even if DNA ancestry tests could predict ancestral origins with perfect accuracy, it would still be a mistake to conflate those results with race.” At the height of the Covid-19 pandemic, some people attributed the Corona virus to Asian people, leading to the pejorative term, China virus. For example, former President Trump called it “the Chinese virus,” which led to a rise in anti-Asian social media activity (https://www.ucsf.edu/news/2021/03/420081/trumps-chinese-virus-tweet-lin…) During the Ebola virus disease in 2014, many people from the African region were barred from entering the U.S. (Ebola, race and fear, BBC.COM (October 21, 2014), https://www.bbc.com/news/blogs-echochambers-29714657. And in the 1800s Cholera epidemic, Americans believed that the Irish caused the disease (Americans once believed the Irish caused cholera, SPRINGFIELD NEWS-SUN (March 17, 2013), https://www.springfieldnewssun.com/news/local/americans-once-believed-t…. This conflation of race and disease is likely to increase racial profiling, an anathema to public health.
This is not to say that all these problems are caused by at-home genetic tests, or that the tests are per se bad for public health. They could be a good thing. For example, several studies have shown racial and ethnic disparities in genetic testing (Racial and Ethnic Disparities in Genetic Testing, 36 J. GEN. INTERN. MED. 1, 35 (2021). This is partly due to the economic costs of traditional testing in a healthcare setting. Since at-home genetic tests tend to be cheaper and affordable (about $200 or less per test kit) for many people, they could reduce testing disparities. It is time public health took notice of the at-home genetic tests.