Legality and DNA
by Henna HundalDo you own your own DNA? At first, the question may seem nothing short of rhetorical. After all, if you don’t have rights to your own genetic code, what can you call yours? But in the current state of affairs, with private companies patenting the “isolation” of genes and state screening programs storing DNA information in databases for years on end, ownership becomes a key issue.
The tension runs deeper than between the individual and testing programs. Family conflicts can arise over the decision to pursue screenings or volunteer for programs that make genomic information publically available. Dr. Nick Patterson, a senior computational geneticist at the Broad Institute of MIT and Harvard, has insight into the intricate considerations that might precede such decisions. Consider, he says, a scenario where a man agrees to donate his genetic information to a project, but his twin brother disapproves of the decision. What goes? Since one individual’s genomic information provides insight into that of one’s parents, siblings, relatives, and even unborn children, who has the jurisdiction to decide that such data may be publically released? Unsurprisingly, the Informed Consent form for the PGP encourages family discussions on the topic. As it reads, “There are risks and discomforts associated with enrolling in the PGP, as described in the PGP consent form and on the PGP website. We strongly encourage you to discuss your interest in enrolling in the PGP study, and the potential risks of doing so, with your family.”
Contextualizing this information reveals perhaps the larger issue of an inability to maintain anonymity with personal genomics. Essentially, there is no sure way to avoid traceability when each person’s genetic code is unique. How insurance companies might figure clients’ genetic data into eligibility and cost determinations poses thorny questions. In 2008, Congress took to address this matter with the passage of the Genetic Information and Non-Discrimination Act (GINA). By requiring that health insurance considerations and workplace operations be unaffected by findings of genetic predispositions to disease, the act hopes to circumvent the potential for discrimination. However, the act’s failure to extend similar protection under other forms of insurance, such as disability insurance, has a weakening effect.
Suffice it to say, the decision to publicly release one’s genome via either a project or company involves various layers of deliberation. As an individual, are you willing to take the risk of potential discrimination due to the possession of certain genetic information deemed disadvantageous? How might your future biological children react to the news that part of their own genome has been released online, that they can be linked to yours, and that they can potentially be subject to the same discrimination based on genomics that you were?
For perspective on nuanced views of the topic, check out the following pieces:
"Private Companies Own Your DNA -- Again" from Forbes