Legal And Professional Policies-Legislator Letter

Legal and professional policies-Legislator letter

August 28, 2021

The Honorable Tina Smith

Federal Government Office in Saint Paul, Minnesota

60 Plato Blvd Suite #220, St Paul, MN 55107, United States

Dear Senator Smith

My name is John Doe, and I am a nursing student at School Name. My intention of writing this letter is to address legal issues associated with genetic discrimination and how this issue relates to both professional and legal policies in the healthcare profession. Genetic discrimination occurs when an individual is treated differently by their employer or insurer based on them having a gene mutation that predisposes them to an inherited disorder. One such disorder is sickle cell anemia which is genetically inherited in an autosomal recessive pattern.

Background of the discrimination of people with sickle cell disease

People who have sickle cell disease are subjected to discrimination due to various reasons such as the status of the disease, race, delayed puberty and growth, socioeconomic status, and having acute and chronic pain requiring management with opioids. Discrimination of people with sickle cell disease is a major problem that needs to be addressed because it affects their access to health insurance services and employment. Health insurance is an important service in people’s lives because health issues may arise at any time, and people may not always have access to money to cater for healthcare expenses. Racism is the main source of discrimination against people with sickle cell disease, thus creating issues in healthcare equity such as less funding support for people with sickle cell and limited access to healthcare. People living with sickle cell disease are also, in some instances, forced to experience their parents being discriminated against and overprotection by their families.

According to Jenerette & Brewer (2010), the onset of discrimination starts with the mother of a child born with sickle cell disease. A study conducted among mothers of children with sickle cell disease in Canada indicated that the mothers had to deal with discrimination and challenges such as separation anxiety, fear of the death of their children, loneliness, helplessness, and isolation (Burnes et al., 2008). Caregivers of children with sickle cell disease viewed their children as having many problems, especially less total competence and emotional issues (Jenerette & Brewer, 2010). These perceptions result in overprotective behaviors. Adolescents with sickle cell disease also face discrimination due to late sexual maturation and delayed growth, delay in secondary sex attributes, and small body mass.

How the Genetic Information Nondiscrimination Act of 2008 applies to people with sickle cell disease

The Genetic Information Nondiscrimination Act of 2008 focuses on protecting people from genetic discrimination. One of the provisions of the Act is prohibiting individual and group health insurers from using an individual’s genetic information in establishing premiums or eligibility. It also prohibits health insurers from requiring and requesting people to undergo genetic testing to gather genetic data for underwriting persons. This provision applies to the discrimination of people with sickle cell disease because they can access healthcare insurance without being denied access. Before the Act was enacted, people with sickle cell disease had difficulty accessing healthcare insurance because they are vulnerable to various illnesses and require a constant supply of medication such as painkillers, thus increasing costs for insurers. Employers such as the National Collegiate Athletic Association also require players to take a genetic test (Duru, 2012). The other provision of the Act prohibits employers from using an individual’s genetic data to make decisions such as firing, hiring, terms of employment, and issuing tasks in the workplace. This provision applies to people with sickle cell disease discrimination because they are often denied employment or given unfavorable employment terms because of their health condition. For instance, Duru (2012) states that the National Collegiate Athletic Association offers players with sickle cell disease shorter or less attractive contracts.

How clients, families, and communities could benefit from your recommendations

I would recommend holding institutions accountable for racism and discrimination against people with sickle cell disease. The public should be made aware of the actions taken against institutions tolerating discrimination of people with sickle cell disease and those exercising white privilege because it is often related to sickle cell disease. I would also recommend ensuring that organizations have policies and procedures accommodating people with sickle cell disease. This includes; ensuring that they are only assigned tasks that are less tedious and requiring them to take a break after taking pain medication. Communities could benefit from this recommendation because they would experience peaceful coexistence due to the elimination of discrimination. Clients could benefit by working in a conducive environment that does not discriminate against them because of their genetics. Families could benefit by getting peace of mind by getting assurance that their loved ones are not being discriminated against in the workplace.

Thank you for your time and unmatched commitment, and will to serve all Americans.

Sincerely,

John Doe, RN

2055 Country Club Rd.

Winston-Salem, NC 27005

[email protected]

(864)-999-6666

References

Burnes, D. P., Antle, B. J., Williams, C. C., & Cook, L. (2008). Mothers raising children with sickle cell disease at the intersection of race, gender, and illness stigma. Health & Social Work, 33(3), 211-220. https://doi.org/10.1093/hsw/33.3.211

Duru, C. (2012). Out for Blood: Employment Discrimination, Sickle Cell Trait, and the NFL. Hastings Race and Poverty Law Journal, 9(2).

Jenerette, C. M., & Brewer, C. (2010). Health-related stigma in young adults with sickle cell disease. Journal of the National Medical Association, 102(11), 1050-1055. https://doi.org/10.1016/s0027-9684(15)30732-x

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