Curious about where you come from?
Ever since we have had a history, humans have been drawn to understanding and knowing that history. While the reasons behind our fascination may be varied, at it’s core, history gives us a glimpse into ourselves, such that through our knowledge, we may better know ourselves and the human experience at large. In recent years, this fascination with our history has become more personalized and easily accessible to the general public who can order a DNA kit, send a sample back to the originating company, and receive an extensive and extremely detailed assessment. This assessment can identify the percentage of various races and regions of the world from which your ancestors originated, bring to one’s attention genetic markers for inheritable traits, such as a propensity for a certain disease or other genetic abnormality, and connect you with others in the database whose DNA sample has revealed a newfound relation. While many view the submission of their DNA to this database as a harmless device meant to assuage curiosity into their origins, recent developments have determined that there are other considerations which must be taken into account.
One unforeseen complication of participating in DNA testing is one’s obligations to life insurance companies, agencies dealing with disability income, and long term care insurance companies. With the increasing accuracy and ease with which DNA testing can determine certain genetic markers for various diseases, such as Alzheimer’s, the duty for disclosure can be paramount when applying for coverage or income from the entities listed above, where nondisclosure can be considered insurance fraud. For example, one might be compelled to disclose that they carry the APOE4 gene, which is a marker associated with a 25 percent risk of developing Alzheimer’s. Around 75 percent of those diagnosed with Alzheimer’s will require residence in a nursing home, which has an annual cost currently estimated at $88,000. Knowing this, an individual carrying this marker would be compelled to acquire life insurance and long term care insurance but would need to disclose their knowledge of the gene to the companies from which they are seeking the insurance. Thus, one must carefully evaluate how to traverse situations such as the one outlined above prior to opting for genetic testing.
Another consideration regarding disclosure is one’s access to employer-sponsored wellness programs. Under HIPAA, one can acquire discounts or rebates on copayments or deductibles to employees complying with a recognized wellness program. Nonparticipation by an employee in the wellness program can potentially result in a 30 percent increase in their premium for refusing disclosure of medical and genetic information through these programs. The choice between exchanging private information or having affordable health insurance can be a tough one to make for many, especially in a world with increasingly accurate genetic testing and skyrocketing health insurance costs. In a recent court decision, these EEOC rules regarding these ‘incentives’ were recently challenged by AARP and the EEOC has been ordered to redraft the rules in such a way that it is a voluntary examination and not a penalty. However, the estimate on when those rules could be redrafted is currently 2021, and thus, it is unlikely the rules will be correct any time soon.
Another consideration, and one that recently made national news when the identity of a serial rapist was revealed in California via DNA testing, is the criminal law implications of having your DNA easily accessible to those with a subpoena. While one must be aware from the recent news from California that it is a possibility that government agencies may be able to gain access to your DNA sample in the midst of an investigation, the process used to acquire the DNA for commercial and medical companies is different than that used to identify suspects in forensic science. Thus, while the possibility exists, commercial and medical DNA testing currently has limited applicability within the field of forensics.
While there are some careful considerations above that one must make when considering their genetic history, there are also laws in place at both the state and federal level that protect those seeking privacy for their genetic and medical information. For the sake of brevity, we will go into a couple of the relevant state Acts. At the state level, Oklahoma has enacted a Genetic Nondiscrimination in Employment Act, which requires that employers cannot obtain or use genetic information or require an employee to provide that information for the purpose of discriminating against an employee or prospective employee. However, as stated above, disclosure is required to life insurance companies, entities providing disability income, and long term care insurance companies. One is only required to disclose genetic information under the Act for a paternity determination request, a request where the party’s genetic information is at issue in a proceeding, the person whose genetic information is at issue and the insurance policy pertaining to the genetic information is at issue as well and/or the genetic information is required for a law enforcement proceeding or investigation or an insurer is reporting fraud. Another state law protecting genetic information is the Genetic Research Studies Nondisclosure Act, which allows genetic information to be used in a publication if it is for educational purposes or research if the individual is not identified or the publication has specific informed consent. Genetic information is not subject to subpoena in civil suits, unless it is the basis of the suit. The records are not subject to disclosure to employers or health insurers without informed consent, with the exception of life insurance companies, disability income, or long term care insurance companies.
In sum, while knowing one’s history and the ease of taking a DNA test to do it may ensnare the fascination of many, being aware of certain drawbacks to possessing that knowledge, especially where genetic markers for disease are concerned, is preferred and recommended. In this way, even if one decides to forge ahead despite the potential pitfalls of such an endeavor, they can at least be informed of their protections and prepared to handle the situations above if they do arise.