The “Value” of Consumer DNA Sequencing

Landon J. Getz questions the value of consumer DNA sequencing in light of serious issues of inconsistency, privacy, and human identity.

__________________________________________

Genetic sequencing for genealogical purposes is ever-more within the consumer’s reach due to rapid increases in the ability of the technology for DNA sequencing, along with dramatic declines in the cost. Many companies, including 23andMe, AncestryDNA, and Living DNA all claim to be able to identify your genetic heritage by geographic location using a DNA sample. The results of these consumer products have come under scrutiny due to inconsistency in results from two identical twins. Further, many concerns arise when we consider the privacy implications that continue to plague consumer DNA sequencing products. For instance, these products have been used in FBI manhunts to track down suspects.  Some companies have given law enforcement agencies access to their databases. Privacy concerns become more serious for Canadians when we consider the uncertain fate of Canada’s Genetic Non-discrimination Act. But beyond this, why are we so enamoured with our DNA? I want to argue here that in fact, as others have argued before, our DNA tells us little about our identities. Here, I will discuss these issues as a follow-up commentary to one I previously published with Impact Ethics.

A recent study in the United States showed that genetic information can be used to link up to 60% of Americans to a relative. With any contextual data (sex, home address, and so on), it is increasingly likely that any company with your genetic sequence could use it to identify you. This becomes an issue for consumers in the United States, where current genetic non-discrimination laws do not protect people in the realms of life, disability, or long-term care insurance. These issues highlight a great need for consumers to understand how their data will be used by consumer DNA sequencing companies, and whether they want their data to be used in this way.

 

Photo Credit: DNA 11, Image description: The portrait of a DNA structure hanging on the wall.

Within our borders, Canada’s genetic non-discrimination laws were quite robust – disallowing required DNA tests, disclosure of DNA sequencing results, or consequences from that disclosure by law – until some sections were found unconstitutional by the Quebec Court of Appeal on December 21st, 2018. The consequences of this decision for consumers are still unclear. What is certain is Canadians will have less privacy surrounding their genetic data and may be open to “genetic discrimination” by employers, insurance companies, and others.

Additionally, CBC’s Marketplace released a report in January 2019 that focused on the issue of genealogical inconsistency. They looked at the results of DNA sequencing in two identical twins to determine their genetic ancestry. The resulting information did not match for many of the companies (which included AncestryDNA and Living DNA), with over 10% variation in 23andMe’s analysis. Multiple companies, when contacted, blame output of their algorithms for the variation. This inconsistency frustrates consumers who are looking to get what they were promised (accurate accounts of their genetic history), a promise which is often called-out by genetics expert as being doubtful in any case.

We are still left with the question: why do we care so much about our DNA? Aside from potential medical uses, the value we place in genetic “soul-searching” likely has roots in genetic (or biological) determinism – the idea that our genes or biology determine everything about us – which manifested and perhaps solidified during the human genome project. However, while this idea sticks around, its validity has been seriously questioned and is almost certainly wrong. Companies and consumers cite finding oneself as a motivation for DNA sequencing, but thinking beyond the issues of privacy and accuracy, does the technology promise “finding oneself” at all?

Using DNA sequencing tests – for genetic lineage or otherwise – in an attempt to uphold, or influence, one’s personal identity is tenuous at best. Focusing heavily on genetic relationships ignores the reality and complexity in human communities and relationships. For example, folks with adopted children would hardly think their non-genetic relationship hinders their ability to love their child. Further, many consumer genetics companies sell products which are supposed to tell you the kind of wine you should like, or if you and your romantic partner really share a connection. Would you believe a DNA test that tells you that you shouldn’t (based on your genetics!) love your romantic partner? Alongside this, studies have shown that people tend to “cherry pick” their results, using them to confirm their (already existing) identities anyways, without considering the whole of the results.

Issues of weakness in connection between genetics and personal identity are amplified by the risks of inconsistent results and serious privacy concerns. Consumers ought to carefully consider the value of consumer genetics products.

__________________________________________

Landon J. Getz is a Ph.D. Candidate at Dalhousie University in the Department of Microbiology and Immunology @landongetz