NUR 3306 – Deliverable 5 – Policy Influences on Healthcare Decisions
Genetic discrimination occurs when individuals receive different treatment from an employer or insurance company because they have a genetic profile that may increase the risk of an inherited disorder that may adversely impact their health (MedlinePlus Genetics, 2020).
Fear of discrimination has always been a concern among individuals considering genetic testing or otherwise providing genetic information for genetic research. The fears about discrimination may affect clients’ desire to participate in genetic-based testing or participate in necessary clinical research.
Many federal and state laws have been instituted to provide individuals with protection against genetic discrimination. On May 21, 2008, President Bush signed H.R. 493, the Genetic Information Nondiscrimination Act [GINA], a law designed to protect people from this form of discrimination. GINA has two parts: Title I, which prohibits genetic discrimination in health insurance, and Title II, which prohibits genetic discrimination in employment. (Genetic Information Nondiscrimination Act [GINA], 2008).
Title I of GINA prohibits health insurers from requesting, requiring, or using a person’s genetic information to determine eligibility premiums or make underwriting decisions. GINA’s health insurance protections extend to private health insurers, Medicare, Medicaid, Federal Employees Health Benefits, and the Veterans Health Administration (GINA, 2008).
NUR 3306 – Deliverable 5 – Policy Influences on Healthcare Decisions
One part of Title I of GINA amended the Health Insurance Portability and Accountability Act (HIPAA), which lays out privacy requirements for health information. The modification to HIPAA, made in 2013, states that genetic information is considered health information; therefore, health insurers cannot use health insurance to decide health insurance benefits, eligibility for services, or the calculation of premiums under a health plan. As defined in the law, genetic information includes family medical history, a manifest disease in family members, and information regarding individuals’ and family members’ genetic tests (GINA, 2008).
Title II makes it illegal for employers to use a person’s genetic information when making decisions about hiring, promotion, and several other terms of employment. It also prevents employers from requesting or requiring genetic information from employees or their family members (GINA, 2008).
Unfortunately, the protections GINA offers do not extend to other kinds of insurance, such as life, long-term care, and disability insurance, all of which can impact an individual’s healthcare. It also does not apply to adoption services, egg and sperm banks, and educational admissions programs. Therefore, in some states, these groups are free to use genetic information regarding insurability, donor suitability, or personnel decisions. (Haga, 2017). However, 24 states have laws prohibiting the use of genetic information or genetic testing by life insurers, disability insurers, and long-term care insurers to prevent discrimination based on genetic information. The U.S. military is permitted to use genetic and medical information to make employment decisions.
Also, GINA does not apply to employers with fewer than 15 employees, which can exclude many people from these protections. (Haga, 2017).
There are implications to informed consent for research. Full compliance with GINA requires that informed consent forms include information on any risks associated with participation in the research project and a statement describing how the confidentiality of records will be maintained.
GINA has implications regarding many wellness programs instituted by workplaces to promote good health and prevent disease among employees. Some employers offer incentives in exchange for participating in these wellness programs in the form of discounts on their insurance premiums. To the extent that these programs provide for the exchange of health information between the employer and employee and, in essence, provide a penalty for those who do not participate, the enforcement of GINA is relevant in these situations. Under GINA, it is permissible for employers to request employees’ genetic information for the purposes of these voluntary wellness programs, but they cannot receive a reward and cannot be penalized for withholding information (Genetic Discrimination, 2020).
The Affordable Care Act [ACA] of 2010 prohibits health insurance issuers from discriminating against patients with genetic diseases by refusing coverage because of ‘pre-existing conditions.’ The ACA further provides additional protections for patients with genetic disorders by establishing that individual health insurers may only vary premiums based on a few specified factors such as age or geographic area, thereby prohibiting the adjustment of premiums because of medical conditions. (Genetic Discrimination, 2020).
The Americans with Disabilities Act (ADA) prohibits discrimination in employment, public services, accommodations, and communications based on a disability. In 1995, the Equal Employment Opportunity Commission (EEOC) issued an interpretation that the ADA prohibits discrimination based on genetic information relating to illness, disease, or other disorders. (Genetic Discrimination, 2020).
NUR 3306 – Deliverable 5 – Policy Influences on Healthcare Decisions
State laws vary widely in the amount of protection provided against genetic discrimination, and therefore, GINA is the minimum protection against genetic discrimination. Some states have passed laws that go beyond the scope of GINA to provide additional genetic. Discrimination protection. For example, in 2011, California passed the “California Genetic Information Nondiscrimination Act” (CalGINA), which extended protections to prohibit genetic discrimination in disability insurance, long-term care insurance, emergency medical services, housing, mortgage lending, education, and other state-funded programs. (Genetic Discrimination, 2020).
The laws and policies, as outlined above, provide comprehensive protection for many clients but leave a lot of gaps where genetic discrimination can occur and adversely impact an individual. GINA offers limited coverage that only affects health insurance and states that do not affect additional protection from genetic discrimination in disability insurance and long-term care insurance. There are also essential gaps in employment given that GINA does not apply to employers with fewer than 15 employees; this can exclude many people from these protections.
As a result, the minimum protection that GINA provides, state laws against genetic discrimination, and the offer and security provided by other laws such as ACA and ADA may not be enough to give protection to all persons in all states. Therefore, it is imperative that the existing laws be redesigned or amended to ensure adequate coverage of all individuals in all states, regardless of their employment status, and extend this coverage universally to other forms of insurance, such as life and long-term care insurance.
References
MedlinePlus Genetics. (2020). Retrieved November 11, 2020, from https://medlineplus.gov/genetics/understanding/testing/discrimination/
Genetic Discrimination. (2020). Retrieved from https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination
Federal Government Policy on Genetic Discrimination in Insurance or Employment Genome.gov. Retrieved from https://www.genome.gov/11510229/federal-government-policy-on-insurance-or employment-discrimination.
Genetic Information Nondiscrimination Act [GINA]. (2008). Retrieved from https://www.genome.gov/24519851/genetic-information-nondiscrimination-act-of-2008.
Haga, S. B. (2017). Overview of Policy, Ethical, and Social Considerations in Genomic and Personalized Medicine. Genomic and Precision Medicine, 19-43. doi:10.1016/b978-0-12- 800685-6.00005-9
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Question 
Write a sample letter to a policy task force or a legislative member or committee that demonstrates client advocacy pertaining to genetic discrimination and its correlation to legal and professional policies.
Make sure to include the following details in the letter:
A description/background of the genetic discrimination
What is the specific problem?
A description of the related legal policy A description of the related professional policy A differentiation of the levels of policy and impact variations Your input that defends your advocacy for clients impacted by the discrimination