DNA tests are increasingly available and increasingly popular. Some companies (23 and Me, Ancestry.com) offer information about the consumer’s ancestry and health, while others (Veritas, Genos) focus more on health data. They require only a saliva sample, and they work by analyzing single-nucleotide polymorphisms (Rutherford 2018; Rajewski 2018). The accuracy of the results varies, and the ancestry information often doesn’t have any coherent meaning (Rutherford 2018).
I don’t know how the “truth” about my genes might affect my life—perhaps it might dispose me to more healthy habits if I saw that I was at risk for diabetes and heart disease. If I had a genetic mutation that might result in a premature death, I would want to have it independently confirmed by a clinical lab (make that two clinical labs), and I would want to know how premature my death was likely to be and what the decline would be like. Then I would just make sure that the days I do have are as meaningful as possible. I might choose to have children earlier (possibly by adoption), and to get a dog sooner. I would also feel obligated to tell whomever I was in a serious relationship with if I might be spending my shortened life with this person.
The ethical standard for research studies is that participants must give informed consent—they must know what they are opting into and choose to do so. However, I learned this summer that health information can be used in research without consent so long as it’s de-identified. Unfortunately, it’s difficult to de-identify DNA, and it can sometimes be re-identified by cross-referencing it against other databases (Rajewski 2018). Therefore consumers should have the option to choose whether or not they want researchers to have access to their information—this could be done all at once in a release or released for individual studies. However, privacy is still a huge concern. Many companies—which are not bound by the same rules as researchers—sell consumers’ information, or even their samples (Rajewski 2018). And if a company changes management, they are no longer bound by their original privacy agreements with consumers (because lawyers exist) (Rajewski 2018). Additionally, police may be able to use companies databases to find criminals, even if the criminals themselve are not in the database (Hill & Murphy 2019). One Florida judge allowed law enforcement access to GEDmatch, a DNA testing company (Hill & Murphy 2019). When you share your DNA, you share information about individuals you’re related to, who may not consent to have that information shared. While this could help police identify dangerous criminals, it also presents significant concerns for U.S. citizens concerned about privacy.
Would I want my insurance company to know my risk profile for diseases? NO!!! While there’s the potential for a slight decrease in my premiums if I have a perfectly healthy profile, there’s also the potential for a significant increase in those premiums if I have a potentially problematic profile. There is a high probability that there’s some kind of potential illness that I’m genetically predisposed to, and if my insurance company only considers my genetic profile and not any lifestyle factors (which I’m also not keen on them knowing because I would like to eat cake without having to pay more for insurance), I may be paying more unnecessarily. Additionally, as with any giant bureaucratic institution, there’s enormous potential for bungling, headaches, and being consigned to Paperworkia, a land of no mercy.
As we move more towards genomic medicine, it’s true that we may take DNA samples from every person to better identify his or her risk profile. This becomes especially true as our ability to treat genetic conditions increases and testing becomes more accurate. However, just as with any medical procedure, patients have a right to refuse. A doctor cannot force a patient to have a blood test or go on a ventilator or have a C-section. Nor should they be able to force patients to take a DNA test. People have a right to choose what information they want to know about their possible futures. This does become ethically concerning especially when you consider the idea of DNA tests becoming as routine for newborns as heel sticks. Children cannot consent to a DNA test, and therefore it is incumbent on their parents to make the best medical decisions that they can for them and otherwise allow them to choose.
Hill, K. & Murphy, H. (2019). Your DNA Profile is Private? A Florida Judge Just Said Otherwise. New York Times. https://www.nytimes.com/2019/11/05/business/dna-database-search-warrant.html
Rajewski, G. (2018). Pulling Back the Curtain on DNA Ancestry Tests. Tufts Now. https://now.tufts.edu/articles/pulling-back-curtain-dna-ancestry-tests
Rutherford, A. (2018). How Accurate Are Online DNA Tests? Scientific American. https://www.scientificamerican.com/article/how-accurate-are-online-dna-tests/