The premise of this article is Walser-Kuntz, Deel, and Singer’s case study in genome privacy (2005). The authors of the case study state that biosciences have been able to isolate the single nucleotide polymorphism (SNP) as part of humans’ DNA markers (Walser-Kuntz, Deel, & Singer, 2005). The SNPs have three uses, according to Walser-Kuntz, Deel, & Singer: genetic markers for disease, specialized applications in medicine, and mapping human evolution (p. 3). Walser-Kuntz, Deel, & Singer (2005) indicate the ethical/privacy problems with having genetic data that reveal individual identities of people and families who have genetic diseases (p. 4). The issues cited are discrimination, stigmatization, loss of insurance, and loss of employment (p. 4). There are several lobbying groups listed in this study who want a voice in policy for or against genome privacy: health insurance companies, life insurance companies, breast cancer coalition, equal employment opportunity commission, academic and private scientist groups, and genetic counselors and physicians (Walser-Kuntz, Deel, & Singer, 2005, p.6). The case study written in 2005 had no firm legislation in place describing how to handle the use of DNA genetic data on individuals. Since then, the Genetic Information Nondiscrimination Act of 2008 (GINA) became effective November 21, 2009 (EEOC, n.d.). The U.S. Equal Employment Opportunity Commission EEOC is a branch of the federal government that enforces laws regarding employee and employer rights in the United States and protects employees from employer discrimination (EEOC, n.d.).
The health insurance companies are of interest in this debate because this author had previously worked as a licensed health insurance agent and represented health insurance companies. The decision to use the health insurance industry is because they typically pay health providers (physicians/ hospitals) for the treatment of medical maladies and charge premiums based on the underwriting of an individual’s medical history. The health insurance companies are businesses that are interested in profits and minimizing risk (Investopedia, 2018). In Title I – Genetic Nondiscrimination in Health Insurance of the GINA refers to the Health and Human Services (HHS) to address the use of genetic information in health insurance (EEOC, 2008) and prohibits the discrimination of individuals based on genetic information in health insurance (Department of Health and Human Services, 2017). In 2013, the HIPAA 45 CFR Parts 160 & 164 modified to strengthen the privacy and security protections for genetic health data on individuals and under the fourth significant provision “prohibits most health plans from using or disclosing genetic information for underwriting purposes” (Department of Health and Human Services, January 25, 2013, p. 5566). The Federal Register (Department of Health and Human Services, January 25, 2013) also elaborates that “genetic information is health information and to prohibit group health plans, health insurance issuers and issuers of supplemental medical policies from using or disclosing genetic information for underwriting purposes” (p. 5568).
The first impression is the genetic data is health information, which means it is known information and disclosed at some point in the individual’s record. The health insurance underwriters/ actuaries will have access to the medical history for purposes of assessing risk when determining health premiums for the individual or group. The first ethical issue is maintaining confidentiality and privacy of the individual. The medical record will have all the recorded history of the individual, and according to the wording in the Federal Register, the genetic information will be in the file as well. The second ethical issue is writing a policy for an individual and including cancer screenings and all cancer treatments because they do not have the disease, however, their genetic information shows there is a strong indication they are highly susceptible for contracting cancer. Traditionally, if an individual has had cancer recorded on their medical record they can be denied coverage for that precise cancer in the new health policy. Prohibited is the insurance company from denying coverage when genetic indicators say cancer. The third ethical issue is the potential for the genetic information to be somehow used to identify the immediate family members of the individual with cancer indicators and, in some way, target those family member’s insurance provider, as if some behind the scenes information sharing is going on in this industry.
In the first ethical issue of keeping the privacy of the individual confident, the opposing view would be to have the record disclosed to other entities like the employer or the life insurance company of the individual, driven by money or saving money for the partner corporation. The second ethical issue is prohibited by the law to use genetic information such as the genetic markers of cancer in an individual. But maybe there is another way or workaround to not write cancer coverage into an individual’s policy such as finding a different fabricated reason not to cover for cancer such finding anything related to causing disease in the medical record, denying coverage for all cancer because there is a history of smoking for instance. The third ethical issue could be used in data research to map groups of individuals (families) to find patterns in the data and a more profound correlation such as where they are from, demographics, and avoid further areas where risks are present.
This paper initially discussed the original case study by Walser-Kuntz, Deel, & Singer, and how they stressed, there should be protections for individuals with genetic information on their records. Protections from being discriminated against by society, employers, or insurance carriers. The Genetic Information Nondiscrimination Act of 2008 became enacted into legislation and covered in the health insurance part in Title I and the employment part covered in Title II (EEOC, 2008). The focus of this paper is the health insurance industry because of previous experiences and personal knowledge of the industry. The HIPAA regulation provisions explicitly state it is prohibited to use or disclose genetic information in underwriting insurance policies. The issue is the genetic information is in the medical file regardless, according to the Department of Health and Human Services (January 25, 2013, p. 5568). The next section of this paper looked at three possible ethical issues that an insurance company could encounter. The assumption made of the wording in the Federal Register regarding genetic information is considered health information and will be on the medical record of an individual. The three ethical issues that someone in the health insurance companies could face are: privacy/ confidentiality issues, anyone who sees the medical record for underwriting can see the genetic information, and the third ethical issue is the identification of immediate and extended family based on an individual’s medical history containing genetic data. What happens to the client data internally is not known, who sees it, is it used for other data analysis, is it shared privately or with confidential partners such questions are difficult to answer without being an insider. The last section describes the opposing viewpoint of the three given ethical issues faced by the insurance industry. The first opposite view could be a matter of saving the company money or partner company’s money by revealing the identity of an individual with high-risk genetics. The second opposing viewpoint could be finding other ways not to cover the individual for the genetic risk via some other listed medical condition in the record. The third opposing viewpoint could be for mapping demographics, and origins of areas were the risks may be high enough to avoid those areas and individuals. Unfortunately, the insurance industry is not out for the betterment of society but profits (Consumer Affairs, 2016).
References
Coalition for Genetic Fairness. (2009). How does GINA impact me? Retrieved from: http://www.geneticfairness.org/ginaresource_impact.html
Consumer Affairs. (2016). Health insurance industry rakes in billions while blaming Obamacare for losses. Retrieved from: https://www.consumeraffairs.com/news/health-insurance-industry-rakes-in-billions-while-blaming-obamacare-for-losses-110116.html
Department of Health and Human Services. (2017). Genetic information. Retrieved from: https://www.hhs.gov/hipaa/for-professionals/special-topics/genetic-information/index.html
Department of Health and Human Services. (January 25, 2013). Federal register – rules and regulations. Vol. 78, No. 17. (pp. 5566-5702). Retrieved from: https://www.govinfo.gov/content/pkg/FR-2013-01-25/pdf/2013-01073.pdf
EEOC. (2008). The Genetic Information Nondiscrimination Act of 2008. Retrieved from: https://www.eeoc.gov/laws/statutes/gina.cfm
EEOC. (n.d.). Laws enforced by EEOC. Retrieved from: https://www.eeoc.gov/laws/statutes/index.cfm
Investopedia. (2018). What is the main business model for insurance companies? Retrieved from: https://www.investopedia.com/ask/answers/052015/what-main-business-model-insurance-companies.asp
Walser-Kuntz, D., Deel, S., Singer, S. (2005). SNPs and snails and puppy dog tails, and that’s what people are made of…A case study on genome privacy. (pp. 1-8). Retrieved from: http://sciencecases.lib.buffalo.edu/cs/files/snp.pdf