Rachel Yu, Class of 2023
Genetic testing serves as the forefront of development within the medical field, opening more discoveries within scientific research and gaining practical use in healthcare. The scientific use of genetic testing originated from the Human Genome Project: an international research project with the goal to map all the genes in the human genome and pinpoint their functions (NHGRI 2019). The advancement of molecular genetics following the project gave rise to the practicality of genetic testing in healthcare, as seen through medical diagnosis and genetic analysis services. Genetic data can reveal one’s susceptibility to specific health conditions and uncover disease before any symptoms are presented (Balaji and Terry 2015). This gives patients the opportunity to make environmental changes to better their physical health. Genetic services like 23andMe and Ancestry.com are companies that translate one’s genome to tangible information like one’s health and ancestry. These tests have become easily accessible to the mass public, even advertised as Christmas gifts around the holidays. While genetic testing has become mainstream within society and heavily beneficial to the medical field, it is important to note that this data poses a potential risk to individuals if mishandled.
Genetic data is critical information to possess because it contains details about one’s physical health which can be used against any person. In addition, studies show that an individual can be identified if their relative’s genome is known (Balaji and Terry 2015). This is reiterated in the Health Insurance Portability and Accountability Act (HIPAA), defining genetic information as one’s genetic tests along with their family’s (USDHHS 2017). This means that all relatives of an individual are at risk due to the misuse of one’s genetic information.
Some genetic testing companies are known to sell customer data to third-party organizations without the consent of the individual. One recipient of this data is law enforcement, who uses the genetic information of suspects for investigative purposes. In 2018, California law enforcement solved an almost 50-year-old cold case of the Golden State Killer using a genealogy website (Jeong 2018). Police inputted DNA from the evidence into the website’s software, connecting them to a list of the suspect’s relatives. The information about these relatives allowed the police to create a genetic profile of the suspect that helped them eventually track down the perpetrator (Jeong 2018). There have been many instances in the last decade where the police have solved criminal cases using genetics. However, this methodology places law enforcement in a constitutionally gray area because this genetic information is often used without consent, violating the fundamental right of privacy, specifically genetic privacy.
While genetic testing reveals one’s medical predispositions, it can also result in prejudice when this information is obtained by other institutions. For example, if the insurance companies have access to their customers’ genetic information, they can deny services or raise charges to those with predisposed medical conditions because they are more prone to illness. If employers have access to an applicant’s genetic information, then the job applicant may be prone to bias based on their health conditions. The occurrence of unfair treatment based on one’s genetics is known as genetic discrimination (NHGRI 2019). In 2008, the Genetic Information Nondiscrimination Act (GINA) was passed. GINA makes it illegal for both health insurers and employers to request genetic information, meaning they cannot refuse insurance or employment because of one’s genetics (US EEOC 2010). GINA also makes it illegal to discriminate against someone based off medical conditions that hasn’t been diagnosed. Another law that protects one’s genetic privacy is the Omnibus Rule of the Health Insurance Portability and Accountability Act (HIPAA) that altered its definition of protected health information to include genetic information. This rule prevents one’s genetics from affecting their eligibility for healthcare. However, this rule discludes protection for life, disability, or long-term insurance, which is the most essential for those with predisposed conditions (USHHS 2017). While GINA and HIPAA protect one’s eligibility for health insurance and employment, these acts do not cover any other aspect of genetic privacy, making governmental and third-party access to this information concerning because it is not legally protected.
Although genetic information is instrumental to the advancement of biological research and medicine, it is important to recognize that this significant data can be dangerous if mishandled. Genetic information is unique to every individual, similar to a fingerprint or social security number. Access to unconsented genetic information through third-party groups can lead to genetic discrimination. Because genetics is a relatively modern development in science, laws have not been able to catch up to protect this new technology. Therefore, it is our responsibility to navigate both the benefits, but also the potential dangers of using our genetic information.
References
About the Human Genome Project [Internet]. U.S. Department of Energy Office of Science; [2019 Mar 26; cited 2019 Nov 14]. Available from: https://web.ornl.gov/sci/techresources/Human_Genome/project/index.shtml
Balaji D, Terry SF. 2015. Benefits and risks of sharing genomic information. Genetic Testing and Molecular Biomarkers [Internet]. [cited 2019 Nov 14]; vol 19(12): 648-9. Available from: 10.1089/gtmb.2015.29008.sjt
Genetic Discrimination [Internet]. National Human Genome Research Institute; [2019 Sept 24; cited 2019 Nov 14]. Available from: https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination
Genetic Information Discrimination [Internet]. U.S. Equal Employment Opportunity Commission; [2010; cited 2019 Nov 14]. Available from: https://www.eeoc.gov/laws/types/genetic.cfm
Health Information Privacy [Internet]. U.S. Department of Health and Human Services; [2017 Feb 1; cited 2019 Nov 15]. Available from: https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html
Jeong R. 2018 Sept 2. How direct-to-consumer genetic testing services led to the capture of the golden state killer. Science in the News[Internet]. [cited 2019 Nov 14]; Available from: http://sitn.hms.harvard.edu/flash/2018/direct-consumer-genetic-testing-services-led-capture-golden-state-killer/
Kytos [Internet]. Tormead Biology Enrichment Programme; [2019; cited 2019 Nov 20]. Available from: https://www.kytosbiology.org.uk/
Genetic data is critical information to possess because it contains details about one’s physical health which can be used against any person. In addition, studies show that an individual can be identified if their relative’s genome is known (Balaji and Terry 2015). This is reiterated in the Health Insurance Portability and Accountability Act (HIPAA), defining genetic information as one’s genetic tests along with their family’s (USDHHS 2017). This means that all relatives of an individual are at risk due to the misuse of one’s genetic information.
Some genetic testing companies are known to sell customer data to third-party organizations without the consent of the individual. One recipient of this data is law enforcement, who uses the genetic information of suspects for investigative purposes. In 2018, California law enforcement solved an almost 50-year-old cold case of the Golden State Killer using a genealogy website (Jeong 2018). Police inputted DNA from the evidence into the website’s software, connecting them to a list of the suspect’s relatives. The information about these relatives allowed the police to create a genetic profile of the suspect that helped them eventually track down the perpetrator (Jeong 2018). There have been many instances in the last decade where the police have solved criminal cases using genetics. However, this methodology places law enforcement in a constitutionally gray area because this genetic information is often used without consent, violating the fundamental right of privacy, specifically genetic privacy.
While genetic testing reveals one’s medical predispositions, it can also result in prejudice when this information is obtained by other institutions. For example, if the insurance companies have access to their customers’ genetic information, they can deny services or raise charges to those with predisposed medical conditions because they are more prone to illness. If employers have access to an applicant’s genetic information, then the job applicant may be prone to bias based on their health conditions. The occurrence of unfair treatment based on one’s genetics is known as genetic discrimination (NHGRI 2019). In 2008, the Genetic Information Nondiscrimination Act (GINA) was passed. GINA makes it illegal for both health insurers and employers to request genetic information, meaning they cannot refuse insurance or employment because of one’s genetics (US EEOC 2010). GINA also makes it illegal to discriminate against someone based off medical conditions that hasn’t been diagnosed. Another law that protects one’s genetic privacy is the Omnibus Rule of the Health Insurance Portability and Accountability Act (HIPAA) that altered its definition of protected health information to include genetic information. This rule prevents one’s genetics from affecting their eligibility for healthcare. However, this rule discludes protection for life, disability, or long-term insurance, which is the most essential for those with predisposed conditions (USHHS 2017). While GINA and HIPAA protect one’s eligibility for health insurance and employment, these acts do not cover any other aspect of genetic privacy, making governmental and third-party access to this information concerning because it is not legally protected.
Although genetic information is instrumental to the advancement of biological research and medicine, it is important to recognize that this significant data can be dangerous if mishandled. Genetic information is unique to every individual, similar to a fingerprint or social security number. Access to unconsented genetic information through third-party groups can lead to genetic discrimination. Because genetics is a relatively modern development in science, laws have not been able to catch up to protect this new technology. Therefore, it is our responsibility to navigate both the benefits, but also the potential dangers of using our genetic information.
References
About the Human Genome Project [Internet]. U.S. Department of Energy Office of Science; [2019 Mar 26; cited 2019 Nov 14]. Available from: https://web.ornl.gov/sci/techresources/Human_Genome/project/index.shtml
Balaji D, Terry SF. 2015. Benefits and risks of sharing genomic information. Genetic Testing and Molecular Biomarkers [Internet]. [cited 2019 Nov 14]; vol 19(12): 648-9. Available from: 10.1089/gtmb.2015.29008.sjt
Genetic Discrimination [Internet]. National Human Genome Research Institute; [2019 Sept 24; cited 2019 Nov 14]. Available from: https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination
Genetic Information Discrimination [Internet]. U.S. Equal Employment Opportunity Commission; [2010; cited 2019 Nov 14]. Available from: https://www.eeoc.gov/laws/types/genetic.cfm
Health Information Privacy [Internet]. U.S. Department of Health and Human Services; [2017 Feb 1; cited 2019 Nov 15]. Available from: https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html
Jeong R. 2018 Sept 2. How direct-to-consumer genetic testing services led to the capture of the golden state killer. Science in the News[Internet]. [cited 2019 Nov 14]; Available from: http://sitn.hms.harvard.edu/flash/2018/direct-consumer-genetic-testing-services-led-capture-golden-state-killer/
Kytos [Internet]. Tormead Biology Enrichment Programme; [2019; cited 2019 Nov 20]. Available from: https://www.kytosbiology.org.uk/
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