DNA Tests, Our Identity Exposed
What is DNA?
Deoxyribonucleic acid (DNA) is a fundamental building block of living organisms. DNA contains hereditary information that is present in almost every cell of an organism. By combining four chemical bases, adenine (A), guanine (G), cytosine (C), and thymine (T), nucleotides are arranged in a double helix spiral formation. This resulting sequence is a unique blueprint which provides information for maintaining the organism.
Humans' DNA consists of 6 million base pairs of ATCG, which are stored in 23 pairs of chromosomes. While 99% of this genetic information is shared among all humans, the remaining 1% is distinct to each individual and accounts for their ancestry.
The Science Behind DNA Testing:
How accurate are DNA tests?
Half of your DNA comes from each parent. Your inherited DNA is not entirely identically to your parents because as the DNA is transmitted it shuffles around in a process called recombination. Without recombination, you would be 1/32nd of each of your ancestors from 5 generations ago. However, with recombination you may have a significantly higher proportion of genetic similarity to an ancestor from 5 generations ago, or you may share zero ancestral similarity. Due to recombination, two siblings results may differ significantly. One DNA test result may come back stating that a sibling is 10% Italian, while the other sibling’s results may say 0% Italian. One sibling is not more Italian than the other, it is simply that the Italian ancestors are more represented in one sibling's DNA over the other's.
How do companies like 23andMe and Ancestry determine a person's genetic ancestry?
Companies that offer ancestry DNA tests do not actually trace your ancestral lineage. There is little access to the genomes of deceased family members from previous generations, hence, your DNA is not matched and compared to your preceding ancestry. Instead, DNA tests look for genetic markers that are prevalent in certain areas. If your DNA test comes back saying you have French lineage, this indicates that you share some genetic similarity to people currently living in France. The assumption is that you then share genetic markers with the ancestors of that area. Ancestry testing is inaccurate because it relies on the database of samples held by testing companies. Other inaccuracies stem from the fact that minorities are underrepresented in these databases. Furthermore, identical twins have received differing results, and individuals who have taken genetic tests from different companies have also received varied results.
Your Privacy at Risk
There are ways in which genetic testing can offer benefits. For instance, genetic mutations can be identified, giving individuals insight regarding how to approach their health. However, this may reveal sensitive information about other family members. Further, a genetic test that identifies an inherited condition cannot predict whether symptoms of the disorder will manifest, or how severe the symptoms may be. Knowledge of one’s potential genetically determine disorder may contribute to greater harmful than solely the symptoms of the disease. Whether knowing or not knowing is better can vary by individual and does not pose a grave ethical dilemma. On the other hand, the genetic data that companies gather, and their distribution of this data challenges our privacy and the principles of autonomy and justice that go along with it.
Joseph James DeAngelo Jr. listens to victim impact statements at the Gordon D. Schaber Sacramento County Courthouse. (Santiago Mejia / San Francisco Chronicle)
Given that our DNA contains information accounting for our various predispositions, behaviors, and health, our genome is a matter of personal privacy. The bioethical principles of autonomy and justice are directly related to the implications of our genetic data being available to individuals other than ourselves. Given that efficiency and profit are fundamental goals of our free market society, deciding who to hire based on their DNA can be an advantageous tool for corporations. Furthermore, offering individuals differing insurance coverage options based on their predispositions to certain diseases may be more cost-effective. This genetic discrimination infringes on autonomy and justice because it does not ensure equal opportunity and will eventually lead to a situation in which individuals with “less desirable” genetic traits, will not only face greater difficulty finding work and health coverage, but will also be explicitly subjugating their successors to this same injustice.
Having ourselves or relatives in the genetic database also opens to door to our genetic information becoming available to law enforcement. Despite privacy policies of the DNA company, using a sample from a crime scene, investigators found the Golden State Killer by matching his DNA to a relative's who had uploaded their genetic data to a public family tree database. The investigation was conducted without a warrant and against the privacy policies of the company. How much power does law enforcement have, and where is the line drawn between private information versus the safety that may be brought about by accessing our genetic information?
Finally, it is troubling that our genetic data is susceptible to being stolen. While genome companies suggest that they store our genetic information in secured databases, there have been hacks resulting in millions of users stolen genetic data. This genomic information can be used for marketing purposes, for discrimination, and potentially for eugenics.
There is appeal and excitement in finding long lost relatives and getting an idea of where one's family might have originated from. It provides a greater sense of identity. However, forfeiting our genetic data to find out this rather unreliable and misleading information comes with serious risks. Given that our society values and strives towards efficiency, it is not unimaginable that genetic information as a sort of mathematical predictor of 'success', reliability and potential health issues will be highly sought after and used to get an edge on the competition. Currently, there are regulations which inhibit genetic data from being used in discriminatory manners. HIPPA requires that individuals consent before giving their genetic data. Further, the Genetic Information Non-Discrimination Act (GINA) states that your genetic information cannot be a factor in health insurance benefits, employment, and eligibility for premiums. We must continue to ensure that these policies and guidelines are adhered by. Otherwise, inequality will become a greater issue than it already is. Autonomy will be diminished for those who are deemed unqualified based on their DNA, and issues of justice will perpetuate within those who may have less 'desirable' traits as deemed by those in power. We must continue to inform the public with respect to the dangers of providing DNA to companies that at some point or another may lose your data or be obliged to give it to the government. International discussions should continue to promote the regulations that are currently in place, and that will be needed as further developments are made in the genetic testing industry.
This page was created by Bioethics graduate student Flavius Rusu.
Flavius Rusu is a second-year graduate student at the Bioethics Institute. He is the Craves Scholar and manages the content for the Bioethics Hub.