Genetic Exceptionalism: The Barrier to a Better Future
Ellie Shin
Article
When asked about our blood pressure, allergies, or weight, most people would be happy to oblige a response. However, if someone were to ask about our genetic disposition to diabetes, most people would be hard-pressed to answer. This phenomenon of willingness to share general medical information but stark refusal to share genetic information is caused by the society-wide concept of genetic exceptionalism. Genetic exceptionalism, or the long-standing belief that genetic information is superior in importance, influence, and privacy to any other type of personal information, even medical information, is inherent to our historical discovery and subsequent understanding of the human genome. However, as our technology advances and academic possibilities expand, genetic exceptionalism has become a largely outdated concept. It has prevented our society from pursuing DNA profiling, precision medicine, and other innovations that require mass genetic information collection. Although at first glance, many may be tempted to follow the ideology of genetic exceptionalism, this belief impedes on our ability to build and apply our knowledge of the human genome.
In the past, genetic exceptionalism has manifested itself in several forms, particularly in the United States. Part of the Health Insurance Portability and Accountability Act (HIPAA) of 1996 bars health providers and health insurance companies from sharing individually-identifying medical information—such as genetic information—with anyone other than the patient, including friends, family members, employers, or even dependents. 1 However, people were unsatisfied with the level of specificity this law provided, so the Genetic Information Nondiscrimination Act (GINA) was passed in 2008. 2 GINA makes it illegal for health insurers or employers to request an individual’s genetic information and also explicitly bars employers from discriminating against an employee on the basis of their genetic information if known, reinforcing the idea that genetic information requires special treatment and protection.
Such emphasis on the human genome is not unfounded. Personal privacy is often raised as the primary support for genetic exceptionalism, as the nonconsensual distribution of any personal information is usually illegal regardless of type. However, genetic information is often viewed as particularly personal because it is essentially the biological code that makes each of us who we are, while other types of personal information—such as race, ethnicity, income, hometown, etc.—are shared by various individuals. Many would also argue that it would be beneficial to maintain absolute secrecy and inaccessibility of one’s genetic information, even if it means that the individual in question lacks information about their own genome. In this manner, mental health can be preserved—if an individual discovers through their genome that they are at higher risk for developing a life-changing disease, they may choose to alter their lifestyle in preparation for the disease even before symptoms manifest. Furthermore, when friends, family, coworkers, or romantic partners learn of one’s genetic inclinations, they may experience bias towards that individual that negatively affects their interpersonal interactions. For example, if an individual learns that their future children may have certain genetic diseases, their partner may be inclined to use a sperm or egg donor in place of their spouse, which can easily result in hurt feelings and a damaged relationship. In these ways, genetic information becomes a truly illuminating aspect of an individual’s personal information, whether for better or worse.
While the concept of genetic exceptionalism has helped our society maintain privacy around genetic information, there are serious drawbacks to viewing one’s genome as an untouchable, almost-mysterious source of information. Currently, the largest drawback is our lack of a genetic database, which would compile all individuals’ genetic information in an organized manner that could be utilized to benefit society. Because the idea of genetic exceptionalism is so prominent and our current laws make it an individual decision to share genetic information, people are largely unwilling to contribute their own genetic data to such a database.
One example of the societal benefits that would result from a genetic database is DNA profiling, or the practice of identifying people by DNA samples through the use of a global genetic database. 3 In our criminal justice system now, investigators collect DNA samples from the scene of the crime and compare them to the DNA samples of those identified as suspects. They can then present a genetic match as evidence in court. Utilizing a genetic database could streamline this process, better facilitating suspect identification and increasing the accuracy of criminal charges.
Another groundbreaking technology that would require a comprehensive genetic database is precision medicine. Precision medicine, according to the U.S. Food and Drug Administration, “is an innovative approach to tailoring disease prevention and treatment that takes into account differences in people's genes”. 4 With precision medicine, healthcare workers could use a genetic database to search and find patients’ genetic information, from which they could determine the medications and treatments that work best in accordance with that specific patient’s genes—for example, this could drastically reduce the frequency with which healthcare workers administer medications that the patient is allergic to. However, society’s concept of genetic exceptionalism again prevents the implementation of what could be life-changing innovations in public safety and healthcare. 5
Essentially, genetic exceptionalism and the way that society uses the idea to govern how we utilize genetic information create a societal unwillingness to participate in a genetic data pool. Unfortunately, this lack of a genetic data pool is holding back technological developments that could improve the safety and well-being of many. One important caveat is that pooling genetic information does not mean that it will become public information, but only trained and trusted professionals from various groups whose job it is to protect us would be able to use that data to better serve us. The laws that protect us from genetic discrimination and other unlawful uses of genetic information would stay in place, and likely even more laws would be passed to ensure the proper utilization of a genetic database, so those concerned for their privacy have no need to worry. We must acknowledge the negative impact of the stringent regulations currently in place due to our belief in genetic exceptionalism, and that loosening those reins would allow us to take massive strides in the numerous fields where genetics are applicable.
About the Author
Ellie Shin is a student at Harvard College and a senior editor of the Harvard Health Policy Review.
References
- Gostin LO, Hodge JG. Genetic privacy and the law: an end to genetics exceptionalism. Jurimetrics. 1999; 21–58.
- Privacy in genomics [Internet]. Genome.gov. [cited 2022 Dec 6]. Available from: https://www.genome.gov/about-genomics/policy-issues/Privacy
- Williams R, Johnson P. ‘Wonderment and dread’: representations of DNA in ethical disputes about forensic DNA databases. New Genetics and Society [Internet]. 2004 Jan 1 [cited 2022 Dec 6];23(2):205–23. Available from: https://www.tandfonline.com/doi/full/10.1080/1463677042000237035
- Health C for D and R. Precision medicine [Internet]. FDA. 2022 [cited 2022 Dec 6]. Available from: https://www.fda.gov/medical-devices/in-vitro-diagnostics/precision-medicine
- Largent EA. Precision medicine research: an exception or an exemplar? J Law Med Ethics [Internet]. 2019 [cited 2022 Dec 6];47(1):149–51. Available from: https://www.cambridge.org/core/product/identifier/S107311050002194X/type/journal_article
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