Let Me Welcome You All to the Wild, Wild West: Facing Reality in the Age of Genetic Testing

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Let Me Welcome You All to the Wild, Wild West: Facing Reality in the Age of Genetic Testing

     I truly, and deeply love California, including all of the six years spent living in San Diego, Twenty Nine Palms, Barstow, Santa Ana, Westminster, Newport Beach, Fontana, San Bernardino, Lemoore, Fontana, Roseville, and Sacramento and the five years spent in Monterey, and I agree "It's all good from Diego to the bay" (2Pac, 2018, 1:16). Despite Tupac Shakur's (2Pac, 2018, 0:47) claim of "the state that's untouchable like Elliot Ness" and the fact that it is the only state to enact a law that prevents discrimination in housing based on genetic information (Clayton et al., 2019), even California has a long journey ahead of it regarding the protection of personal rights and privacy in relation to genetic information. 

     Truly, if we are to face reality and not relinquish our objective view to the illusions that are often spoon-fed to us, we need to face the fact that we lost privacy many years ago. As the child said to the emperor, "you have no clothes". Although we may believe we are afforded some protection by the US Constitution's Fourth Amendment clause that says in part, "The right of the people to be secure in their persons" (Fourth Amendment of the Constitution of the United States, 1791), no states have enacted laws that completely protect us from surreptitious methods of DNA collection and its subsequent analysis (Clayton et al., 2019). The Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA) afford us negligible protections other than to issues that revolve around health care and health insurance. Health-related issues are a minute consideration when it comes to genetic information and personal privacy.

     Consider a broader national security scope regarding this topic. On December 20, 2019, the United States Department of Defense issued an advisory to all service personnel asking them to refrain from taking genetic tests provided by direct-to-consumer genetic testing companies, in part due to the possibility of outside parties exploiting the data for surveillance and tracking efforts (Office of the Secretary of Defense, 2020; Yahoo News, n.d.) This author would be further concerned that there is a potential for custom biological weapons to be developed and used against key US personnel. Yet, there are remarkably few restrictions that genetic testing companies need to follow in relation to whom they can disseminate genetic data. (Clayton et al., 2019).

     Dialing the focus tighter to a more personal level, there are no significant United States statutes prohibiting the surreptitious gathering of genetic material from other persons and submitting them for analysis to genetic testing companies. The burden is left to the states who have enacted very few significant laws. The genetic testing companies are not held accountable and will happily provide the information to whoever pays for the testing and analysis. When compounded with the widespread legal past precedence that garbage or personal effects that are abandoned no longer afford the discarding individual the privilege of privacy regarding knowledge and information obtained from those items, we are essentially left in a state where the continual cellular shedding of our bodies leave a trail of genetic information to which we have no rights or expectations of privacy. This applies even to genetic material left on dining silverware, drinking vessels, and bubble gum (Clayton et al., 2019). 

     When it comes to the privacy of genetic information, we have no clothes. This glaring lack of privacy afforded to us by the ever-increasing speed of change surrounding genetic technological advances and the contentious, lumbering speed by which legislation is derived leaves us as vulnerable children before the wolves. We are grossly unprepared in our safeguards of autonomy, privacy, and confidentiality when it comes to genetic information protection. Given this, the question of when or even if we should conduct genetic testing becomes heavily biased at both ends. 

     To completely prohibit testing helps to ensure privacy and safety but leaves us ignorant of the knowledge that can elevate our species well beyond the threshold we are at now. In a benevolent world, mandated testing would provide essential data that could identify, and given the rate of technical advances, potentially soon eliminate many debilitating genetic diseases. Therefore the logical answer to the question of when genetic testing should be implemented becomes -- at a time when we have sufficient safeguards in place to protect individuals to a level acceptable to a reasonable person who is conscientiously aware of the benefits to humanity that genetic testing might provide. 


References

2Pac. (2018, October 20). California Love (Original Version). YouTube. Retrieved on February 11, 2023, from https://www.youtube.com/watch?v=J7_bMdYfSws

Clayton, E. W., Evans, B. J., Hazel, J. W., & Rothstein, M. A. (2019). The Law of Genetic Privacy: Applications, Implications, and Limitations. Journal of Law and the Biosciences, 6(1), 1–36. https://doi.org/10.1093/jlb/lsz007

Fourth Amendment of the Constitution of the United States. (1791, December 15). Congress.gov. Retrieved on February 11, 2023, from https://constitution.congress.gov/constitution/amendment-4/

Office of the Secretary of Defense. (2020, Feburary 5). OSD Advises Service Members Against Using DTC Genetic Testing. Army.mil. Retrieved on February 11, 2023, from https://www.army.mil/article/232314/osd_advises_service_members_against_using_dtc_genetic_testing

Yahoo News. (n.d.) DOD Memo On DNA Testing. Scribd.com. Retrieved on February 11, 2023, from https://www.scribd.com/document/440727436/DOD-memo-on-DNA-testing#


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