Policy Influences on Healthcare Decisions
Scenario
You recently joined the American Nurses Association and volunteered to serve on a committee focused on health policy issues. A policy topic of concern for this committee is genetic discrimination. You offered to write a letter to your national legislator in your voting district addressing legal and professional policies associated with genetic discrimination.
Instructions
Write a professional letter to your legislator demonstrating advocacy for legal and professional policies that protect individuals from genetic discrimination.
In this letter, include the following information:
Describe the concern for genetic discrimination, including a background of the genetic condition and the specific issue at risk for discrimination
Compare current federal and state policies (legislation) that impact genetic or genomic issues
Analyze professional nursing policies that address ethical advocacy for the selected genetic or genomic issue
All content must be supported by providing rationales, examples, and evidence from credible sources
Jessica Durkin
Minooka, Illinois, 60447.
8th August 2023,
Senator Tom Bennett
1715 North Division Street
Suite E
Morris, IL 60450
(815) 432-0106.
To Whom It May Concern,
I hope this letter finds you in good health. I am writing to express my deep concern regarding the issue of genetic discrimination and to advocate for stronger legal and professional policies that protect individuals from such discriminatory practices. As a constituent in Iroquois County, I am committed to promoting equitable access to healthcare and preserving the dignity of every individual.
Genetic discrimination is a pressing issue that affects countless lives, particularly those with genetic conditions. One such condition is Huntington’s disease, a neurodegenerative disorder with a strong genetic component (Mendizabal & Jones, 2023). Individuals with a family history of Huntington’s disease often face difficulties obtaining health insurance, employment, and even housing due to fears of their genetic predisposition. This situation infringes upon their basic human rights and hinders crucial preventive and therapeutic measures that could enhance their quality of life (Mendizabal & Jones, 2023).
Current federal and state policies on genetic and genomic issues exhibit a patchwork of protections, leaving significant gaps in safeguarding individuals from discrimination. While the Genetic Information Nondiscrimination Act (GINA) 2008 offers some federal protections against genetic discrimination in health insurance and employment, it lacks comprehensive coverage. State policies vary widely in scope and effectiveness, resulting in inconsistent protections for individuals with genetic conditions (Suter, 2020). A federal policy framework encompasses all aspects of genetic discrimination across various domains to ensure consistent and robust protection.
In nursing, ethical advocacy is a cornerstone of our commitment to patient care and social justice. The American Nurses Association (ANA) has advocated for the rights of patients and individuals with genetic conditions. The ANA’s Code of Ethics for Nurses emphasizes advocating for patients’ rights, promoting equitable access to healthcare, and challenging discriminatory practices (Robichaux, 2017). Subsequently, nurses are responsible for raising awareness about the impact of genetic discrimination on patient well-being and advocating for policies that uphold the principles of justice and respect for all (Robichaux, 2017).
To holistically address genetic discrimination, I urge your support for a multi-pronged approach. Firstly, expanding the Genetic Information Nondiscrimination Act (GINA) is crucial. Championing legislation that broadens GINA’s protections to encompass housing and life insurance would create a consistent shield against genetic bias, benefiting all individuals (Bélisle-Pipon et al., 2019). Collaborating with state legislators to formulate comprehensive state policies in harmony with federal standards yet attuned to Minooka, Illinois’ unique needs, is vital. Allocating resources for public education campaigns is equally imperative. Such campaigns would debunk misconceptions, erasing the stigma surrounding genetic conditions (Clayton et al., 2019). Lastly, fostering partnerships among healthcare professionals, genetic counselors, and organizations, bolstered by your support, will equip healthcare providers to navigate genetic intricacies, advocate for equitable care, and mitigate discrimination risks (Bélisle-Pipon et al., 2019). By endorsing these strategies, you have the power to nurture an inclusive society that safeguards the dignity and rights of all, irrespective of genetic background.
In conclusion, the issue of genetic discrimination is of paramount concern and requires immediate attention from our legislative bodies. By enacting stronger legal protections and fostering a culture of ethical advocacy, we can ensure that all individuals, regardless of their genetic makeup, receive fair and equitable treatment in all aspects of life (Mendizabal & Jones, 2023).
I appreciate your dedication to the well-being of our constituents and look forward to your support in addressing this critical issue. Together, we can create a society that values diversity and upholds the principles of justice and compassion.
Thank you for your time and consideration.
Sincerely,
Jessica
References
Bélisle-Pipon, J. C., Vayena, E., Green, R. C., & Cohen, I. G. (2019). Genetic testing, insurance discrimination and medical research: What the United States can learn from peer countries. Nature medicine, 25(8), 1198-1204. https://doi.org/10.1038/s41591-019-0534z
Clayton, E. W., Evan
Genetic disorders are a spectrum of disorders caused by gene mutations. Whereas some mutated genes are passed from the parents, some occur during the early developmental phases of a child (Roberts & Bricher, 2023). Cystic fibrosis, sickle cell anemia, Down syndrome, and Huntington’s disease are some of the most commonly encountered genetic disorders (Angular et al., 2020); however, this paper focuses on cystic fibrosis.
Mr. N, a 45-year-old male of European descent, presented with complaints of cough and fatigue. A subjective assessment of the patient revealed that he had had multiple episodes of pneumonia. Colonization with Pseudomonas aeruginosa was positive in one of the pneumonic presentations. Findings also revealed digital clubbing, cyanosis, and salty sweat. The patient was diagnosed with cystic fibrosis. This diagnosis was confirmed by the panel test.
Several types of genetic testing are available for cystic fibrosis. These tests can be used to diagnose the disease, screen for disease carriers, or determine the presence of a mutation that can lead to the disease. The cystic fibrosis gene panel test is an example of a genetic screening tool for cystic fibrosis (Farrell et al., 2020). Positive results, per this diagnostic tool, are the presence of common mutations on the CFTR protein. The cystic fibrosis gene mutation panel is valuable in detecting common abnormalities in the cystic fibrosis transmembrane conductance (CFTR) gene on the seventh chromosome (Francis et al., 2023). This genetic testing tool is highly accurate in diagnosing cystic fibrosis and identifying cystic fibrosis disease carriers.
Nurses are part of the interdisciplinary team involved in the comprehensive management of cystic fibrosis. Nursing priorities for these patients include managing airway inflammation and obstruction, managing depressed respiratory functionalities, infection prevention, and providing patient education on the disease to address any potential knowledge gaps (Odobasic Palkovic et al., 2020). Maintaining airway patency and improving gas exchange will be the first point of nursing care for Mr. N. This can be attained by monitoring his vitals, assessing cough effectiveness, assessing changes in the respiratory status, sputum, and the chest wall for chest expansion, and offering pharmacologic support. These interventions are targeted at ensuring optimal ventilation and preventing respiratory distress.
Patient education is also integral to the nursing care plan for this disease. Patients with cystic fibrosis are educated on their disease, infection control and prevention strategies, and other self-care aspects such as optimal nutrition. Nurses play a role in educating the patients about the importance of hand hygiene in preventing infection, optimal nutrition to enhance lung function and the overall health of the patient, and proper infectious waste disposal to avoid possible contamination. The nurse will also educate the patient on the manifestations of the disease to help them identify exacerbations and seek care (Odobasic Palkovic et al., 2020). These educational strategies will help Mr. N maintain accountability for his health and disease management.