Curiosity about where one comes from is a natural, human instinct. Everyone wonders who their ancestors were, where they came from, and what they looked like. Companies like 23andMe and ancestry.com have risen in response to these longings, allowing people to learn about the ancestors by taking DNA tests. Although they have found some success in quenching this need, they have also been dogged by privacy concerns.
Recently 23andMe announced that it had received four requests for DNA information from federal authorities over the past nine years. Though 23andMe denied the requests, the statement indicates that there is police interest in information held by companies like 23andMe.
This is a problem because accusing people based on DNA information gathered from ancestral websites can lead to wrong accusations. For example, in December 2014, 36-year-old filmmaker Michael Ursy was wrongly accused of being a suspect in the unsolved 1996 murder of Angie Dodge. Detectives investigating the mystery used familial searching, a technique that identifies suspects through DNA analysis by examining the Y chromosome. A promising match was made between the test sample and the genetic profile of Michael Ursy’s father — who had submitted his DNA to the Sorensen Molecular Genealogy Foundation, a company acquired by ancestry.com. The match showed that the suspect could not be the father, but could be one of his relatives.
Since Ursy’s name was under a protected section in the database, detectives presented a court order to ancestry.com and obtained Ursy’s name. Deductive reasoning and Facebook searches ultimately lead detectives to identify Michael Ursy as the suspect. After accusing Ursy, a semen test was conducted, and it revealed that Ursy was, in fact, not involved in the murder. Though Ursy was immediately cleared, the case shows the perils of letting federal authorities have access to DNA collected from companies like ancestry.com.
Wild-goose criminal chases that could result from police access to DNA from ancestral searches are not the only problems with companies like 23andMe and ancestry.com. Such companies can also reveal information about whether or not a person may have a tendency to develop certain life-threatening diseases.
However, there is a darker side to this than coping with news about genes that may lead to ailments.
Analogous to Google—a company that makes over $10 billion dollars a quarter because it helps advertisers target people based on their searches—there is a potential risk that these companies could monetize the information they receive from people trying to fill out their family tree by selling the information to insurance companies.
While Google’s use of the information at their disposal is often relatively harmless, giving insurance companies access to the information in databases containing individuals’ personal health information would have disastrous consequences. Certain insurance companies could abuse the information they receive, and can refuse to insure a person if they deem that person a poor risk. This recently happened to Jennifer Marie, a woman who was denied life insurance because she tested positive for the BRCA1 gene, which can lead to breast cancer. These same insurance companies could also charge exorbitant rates because they want to be sufficiently compensated for taking on the increased risk indicated by a DNA test.
Anne Wojcicki, the CEO of 23andMe brushes off complaints about healthcare companies abusing information they may seize by citing the 2008 Genetic Information Nondiscrimination Act (GINA), which “protects individuals from genetic discrimination in health insurance and employment.”
But there is a loophole here. GINA does not mention life insurance companies, which could still deny people insurance based on their genes, as indeed happened in the case of Jennifer Marie.
Ultimately, deciding whether or not one should quench their thirst about where they come from using services such as 23andMe and ancestry.com is a personal decision. However, it is important to ask questions about the motives and consequences of companies that use electronic databases to store acquired DNA information.
Contact Ramya Balasingam at ramyab ‘at’ stanford.edu.