It’s 2018 and you see an ad for a DNA test on TV. Your curiosity is piqued and you order the kit to see what your unique genetic signature has to hold. You get your results in the next six to eight weeks and read through the information slowly. Alright, so now your part is complete and you share your results with your family and friends, but what happens to that information once it’s been collected?
These tests are known as direct-to-consumer genetic tests (DTC-GT) (Laestadius, Rich, & Auer, 2017). Chances are, for you to receive these DTC-GT results you have to sign privacy and consent forms, and, if you are like a majority of the population, you sign and agree without reading these statements in detail. Even if you do decide to read them one by one, the scientific and medical communities have previously expressed concern regarding exactly how forthcoming companies are with regards to privacy policies, terms of service, and secondary use of collected genetic data (Laestadius, Rich, & Auer, 2017). Your genetic details can be given out without you knowing.
Genetic information isn’t only attainable by clicking add to cart then waiting a month and a half. Many doctors provide genetic testing and screenings every day, especially to those who know they have a family history for a certain ailment. Doctors often send expectant mothers to do genetic testing so that they may rule out potential postnatal health defects, most well known of the identifiable genetic disorders being Down Syndrome, which occurs when a person carries a partial or complete copy of chromosome 21. Due to the growing number of tests and wider accessibility, it’s become much easier to easily obtain potentially life-saving information. With all these new advances in genetics is it important to drill down into the darker, negative side of genetic testing such as genetic discrimination.
Some of the most commonly known forms of discrimination are related to religion, race, ethnicity, gender, or age. The idea of genetic discrimination is the same; treating people based on if they lack, or conversely possess, a specific genetic trait. (Billings, et al., “Discrimination as a consequence of genetic testing.”). Genetic discrimination does not take into account whether or not a trait is physically apparent. Someone who is asymptomatic for a specific disability will be discriminated against just the same as someone who is presenting symptoms if they both possess the related gene. The topic of genetic discrimination comes into play when dealing in insurance, employment, and the future advancement of genetic research. The future of genetic research is greatly at stake. There is a fear that anyone who participates in a medical study may have their information leaked, therefore subjecting them to discrimination. (Clayton, Halverson, Sathe, & Malin, 2018) This will stifle future research because participants will be hard to come by.
In the insurance industry, it is common practice to collect a multitude of health information from people who are updating current insurance policies or applying for a new insurance plan. The data is compiled and utilized in a few different ways. When someone lists on their medical history that they have a parent or grandparent with cancer, for example, the insurance company marks them as someone who has a greater propensity to develop the illness. In turn, the policy premium is increased to cover what could become a heavy financial burden on the provider if that person develops the ailment in the future. This practice manages to completely exclude those who cannot afford to pay for their plan. In some cases, aside from health insurance coverage issues, people are finding that they are also struggling being approved for life insurance despite being asymptomatic (Low, King, & Wilkie, 1998).
Genetic discrimination in the workplace is also a concern amongst those who are aware they carry certain genes. Most people are scared that if they tell an employer or coworker this information, the employer will focus their efforts and give more opportunities to those who don’t possess the bad gene. Due to the fact that these forms of discrimination can be more subtle being that not all genetic abnormalities can be physically seen, it is harder to address and remedy these fears. Employees are concerned that if they disclose genetic information to their employers, they will be outcast and labelled amongst coworkers (Wauters & Hoyweghen, 2018). This creates an issue if the employee needs a reasonable accommodation related to their impairment.
A reasonable accommodation as defined by the American with Disabilities Act of 1990 (ADA) is providing or modifying equipment or devices, job restructuring, part-time or modified work schedules, reassignment to a vacant position, adjusting or modifying examinations, training materials, or policies, providing readers and interpreters, and making the workplace readily accessible to and usable by people with disabilities. An employer is required to provide a reasonable accommodation to a qualified applicant or employee with a disability unless the employer can show that the accommodation would be an undue hardship — that is, that it would require significant difficulty or expense. (“The ADA: Your Employment Rights as an Individual With a Disability”)
Despite all the glaring negative points in the face of accessibility to genetic information, it is impossible to deny that the results gleaned from genetic testings or screenings done can provide a patient with a more detailed vision of what they may have in store for them. Some examples are patients whose family members have a history of cancer, heart problems, diabetes, or high blood pressure; they get screened or tested for the illnesses they are susceptible to. A cumulative reading of all the results that come from all the tests can provide information that will allow these patients to live a longer, healthier life (or at the very least, they are aware of their situation). In pregnant women, genetic screenings are a part of basic prenatal care. In the specific case of expectant mothers, these screenings are usually provided to identify any possible genetic anomalies that may be present in the developing fetus.
Despite there being controversy as to the utilization of this information, for example the termination of a fetus after only a genetic screening without further diagnostic testing (Nierenberg, 2018), the information gathered can provide parents with critical information regarding the future of their newborns. For example, it will give them the ability to prepare for any special needs the child may have after birth.
Another positive outcome of genetic screening is for those who have no information on their family medical history such as adoptees or those with no contact to biological relatives. These tests can help provide pivotal information that was likely not available due to the lack of contact with others who might fill in the blanks.
As far as whether or not wider accessibility to genetic information will cause discrimination, I would say yes it absolutely will. Given that in the modern day discrimination is still widely visible both in the public and in social media, there is little doubt that given another label people will find a reason to lump together and discriminate against those who possess different genomes. In fact, the idea that certain races or genetics are better than others has already been illustrated by the 1883 concept which was based on Darwin’s idea of Natural Selection. Francis Galton postulated that by choosing specific genotypes, a superior race will prevail. This notion was utilized heavily by the Nazis to support their cause, mainly mass genocide (Wilson, 2018).
In another example, to a disabled person who may need to request a reasonable accommodation or request to go on leave under the Family and Medical Leave act, or FMLA, due to their disability may fear that regardless of current legislature, employers will find a way to terminate those who have or are prone to develop certain genetic problems.
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