As genetic testing advances, results may predict not just health but personality and intelligence, raising ethical questions about the applications of such information.
From video calls with doctors to watches that sense irregular heart rhythms medical technology has become increasingly personal. And it doesn’t get any more personal than examining DNA- the essence of every person and what makes them unique. Genetic testing has come a long way since its initial use in the 1950s. It can provide a wide array of information about individuals’ health by looking for mutations in DNA. The results may empower people to seek treatment, adopt healthier habits, and better prepare them for the future.
A large portion of testing determines individuals’ risk for having, developing, or being a carrier of a genetic disorder. Patients may require genetic testing if they have a family history, belong to an ethnic group at higher risk, or if they present symptoms and their physician wants to confirm a diagnosis. Depending on the reasons for the test, the results are used differently. A positive diagnostic test may mean starting a treatment plan. A carrier test may be useful before having children, especially for heterosexual couples that suspect both partners are carriers.
Another type of testing used in family planning is preimplantation genetic diagnosis (PGD). This looks for markers of diseases and disorders in an embryo giving parents knowledge about their potential children. PGD has been at the center of much controversy especially for those that believe life begins at fertilization. They make points similar to those used in anti-abortion arguments, that not implanting an embryo disregards or devalues “the sanctity of life.” However, U.S. laws and health policy do not confirm this belief as they progressively place greater moral status on embryos, fetuses, and newborns as they develop. State laws vary in how late abortions may be performed, illustrating that earlier stages of development are viewed differently from later stages.
Opponents also object to this type of genetic testing believing, over time, the selection of certain traits will lessen genetic diversity. Advocates for those with disabilities endorse this argument, adding that selection also discriminates against those with disabilities sending the message people with them are less valuable or less desirable. Parents may choose to fertilize one sex of embryos if they have a family history of a sex-linked disorder. Those against PGD argue parents will begin selecting based not just on “health” but preference for one sex over the other. They claim this will lead to selection based on other preferences such as appearance, “talent, personality…even though it is not technically possible at this time.”
While not possible yet, advances in genetic testing have started conversations about what tests may look for in the future and the applications of such results. Discrimination based on genetic testing was a real concern before the passing of the Genetic Information Nondiscrimination Act (GINA) in 2008. The law focuses on protecting people in two key areas of life- employment and health insurance. But one article in the Oxford Academic Journal of Law and the Biosciences explores how more accurate and precise testing may lessen protections in both areas to the benefit of some and detriment of others. For example, “there is some evidence that certain genetic variants are correlated with world-class athletic performance.” Those wishing to become professional athletes may want to have genetic testing to see if they have a variance that would make them more appealing to teams. Similarly, professions that value intelligence and empathy may utilize genetic testing if it advances to predicting such traits. Empathy has proven to be an essential skill in healthcare professions. Medical schools and hospitals could look at results before admitting students and residents.
Tests may also work against people predicting liabilities rather than assets. In high-risk situations such as driving a school bus or flying planes, employers “may have a legitimate interest in genetic factors that would, hypothetically, significantly increase the chance of suffering an epileptic attack.” However, if genetic information was more widely used and publicized a case could be made for accommodations and protections for those with “liabilities.” Similar to the Americans with Disabilities Act, employees may continue to work but with modifications made to their environments.
Allowing the use of genetic information in one protected area could have devastating consequences in the other. Some may argue those who have a genetic condition use healthcare services more and therefore should contribute more to the cost of those services through higher premiums. This raises similar points about selecting job candidates. These practices would discriminate against those with perceived or possible disabilities. But unlike choosing job candidates, this concerns profits not safety. This system would punish people for something outside of their control based on possibly inaccurate results. Furthermore, despite certain, outdated arguments against, healthcare is a basic human right. As stated by the World Health Organization (WHO), “When people are marginalized or face stigma or discrimination, their physical and mental health suffers. Discrimination in health care is unacceptable and is a major barrier to development.” Putting barriers to care will not create a healthier society, it will only push those that cannot access care further from the help they need.
Currently, genetic information is protected. Those wishing to be tested should not fear potential discrimination. While there is still room for error, testing provides useful information for patients and their doctors. A good way to gauge if testing is necessary is by talking with family members, writing down what conditions they have, when they were diagnosed, and what symptoms they experience. Health professionals can then use this information to determine the best course of action. It may include genetic testing or simply earlier and more frequent screenings. Additionally, knowing family history can encourage other preventative actions patients can do on their own, like exercising regularly and maintaining a healthy diet. Since some of these conditions are multifactorial, environmental improvements and lifestyle changes can have a positive effect.