Sample Answer for DNP 810 Topic 8 DQ 2 Included After Question
There are several issues that undermine clients’ rights to make genetic and genomic-related decisions and then take action. Identify two issues that you have seen undermine these rights in your clinical setting. What are potential solutions for each? What is your role as the patient advocate with each issue? Explain. Support your rationale with a minimum of two scholarly sources.
A Sample Answer For the Assignment: DNP 810 Topic 8 DQ 2
Title: DNP 810 Topic 8 DQ 2
Genetic and genomic applications are diverse and generalizing about the psychosocial harms of testing in these areas is challenging. Some interrelated factors about genetic and genomic testing must be understood. The first regards the characteristics of the genetic variants themselves, including the likelihood of developing a health condition when the variant is present and the range of severity in the health outcome when the variant is present. These bear on what risk information would be conveyed to an individual who has undergone the testing and how serious those results would be. A second factor concerns the nature of the health condition with which the variant is associated. It is one thing to test for cystic fibrosis and another to test for type 2 diabetes; each has its own range of health impacts, prognosis, and prevention or treatment options. The purpose of the testing is the goal to diagnose an already existing set of symptoms, assess risk for future disease, facilitate an intervention to prevent a disease from occurring. The context in which the testing is done is the test being conducted in a clinical setting with an individual who already has a familial risk for a disease, or is it being applied as a large-scale population screen among individuals with unknown prior risk. The impact of genetic and genomic testing has examined its use as a means of predicting and preventing a disease in pre-symptomatic individuals, the testing is often used to assist in narrowing down or confirming a diagnosis for individuals who are already experiencing symptoms. In the midst of symptom management and diagnostic processes, there is less likely to be time to conduct extensive genetic counseling or space for emotional processing by patients. Therefore, it is valuable to consider how the response of symptomatic patients to genetic and genomic testing may differ from other testing contexts American Society of Human Genetics,2020).
Genetic testing can provide only limited information about an inherited condition. The test often cannot determine if a person will show symptoms of a disorder, how severe the symptoms will be, or whether the disorder will progress over time. Another major limitation is the lack of treatment strategies for many genetic disorders once they are diagnosed. Many of the risks associated with genetic testing involve the emotional, social, or financial consequences of the test results. People may feel angry, depressed, anxious, or guilty about their results. In some cases, genetic testing creates tension within a family because the results can reveal information about other family members in addition to the person who is tested. The possibility of genetic discrimination in employment or insurance is also a concern (F. Vansenne, P. M. Bossuyt, and C. A. de Borgie, 2019).
References
American Society of Human Genetics, American College of Medical Genetics. (2020). Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 57, 1233-1241.
F. Vansenne, P. M. Bossuyt, and C. A. de Borgie, “Evaluating the Psychological Effects of Genetic Testing in Symptomatic Patients: A Systematic Review,” Genetic Testing and Molecular Biomarkers 13 (2019): 555– 63.
A Sample Answer For the Assignment: DNP 810 Topic 8 DQ 2
Title: DNP 810 Topic 8 DQ 2
Genetic research studies consider two general categories of ethical and social issues: genetic privacy and discrimination. Genetic privacy concerns also reside within criminal contexts because federal involvement can override the genealogical privacy of criminal suspects and the acquirement of genetic samples (Evans & Jarvik, 2015). The shared genetic information between family members also raises privacy concerns for relatives. The compromise of genetic privacy can ensue should testing companies be allowed the accessibility of your genetic information or if your data is stolen (Evans & Jarvik, 2015). Genetic testing results may impact your ability to obtain life, disability, or long-term care insurance (Tenenbaum & Goodman, 2017). Furthermore, genetic discrimination can follow through under the circumstances surrounding the differing treatment of either insurance company or employer due to a genealogical mutation responsible for inducing or heightening risks concerning an inherited disorder. Fear of discrimination is a common concern among people considering genetic testing (Tenenbaum & Goodman, 2017).
GINA, otherwise recognized as “The Genetic Information Nondiscrimination Act,” is an anti-discrimination law that exempts privacy-related involvement (Tenenbaum & Goodman, 2017). Moreover, this specific act is a preventative measure for both Medicare supplemental plans and group health. However, this act excludes life, disability, or long-term care plans—from using genetic information to discriminate against you regarding insurance (Tenenbaum & Goodman, 2017). In addition, title II of GINA prohibits using genetic information to discriminate in employment decisions, such as hiring, firing, and promoting (Tenenbaum & Goodman, 2017). An Executive Order accompanying GINA acts as a prohibitive measure concerning federal government agencies, which obstructs their ability to obtain gene-related information on either job applicants or employees and utilize similar information for hiring and promotion decisions (Tenenbaum & Goodman, 2017).
In 2013, HIPAA regulations were amended through the HIPAA Omnibus Rule, enabling the inclusion of genetic information in the definition of Protected Health Information (PHI) (Evans & Jarvik, 2015). Moreover, this specified rule serves as a preventive measure for employing that data for other variants regarding the plan of medical care but not for a long or otherwise lifetime duration (Evans & Jarvik, 2015).
As an advocate, it is essential to increase awareness of genetic testing, awareness of genetic nondiscrimination laws, concern about genetic discrimination in determining life insurance eligibility and cost, and the perceived importance of genetic nondiscrimination laws that address life insurance (Parkman et al., 2015). Continued dialogue regarding how GINA protects the privacy of and guards against the misuse of genetic information obtained through research (Parkman et al., 2015). The law reassures research participants that they can volunteer for studies without it harming their job or health insurance. The growing concern about employers needing to obtain or disclose genetic information about employees or potential employees under most circumstances. Genetic testing and employers’ use of genetic information should be permitted in the following situations to ensure workplace safety and health and preserve research opportunities (Parkman et al., 2015). California Governor Gavin Newsom signed the Genetic Information Privacy Act (GIPA) into law recently, which went to effect in January. The law requires genetic testing companies to be transparent about data collection practices regarding genetic data and obtain written consent from individuals to use the data (Parkman et al., 2015).
References
Evans, B. J., & Jarvik, G. P. (2018). Impact of HIPAA’s minimum necessary standard on genomic data sharing. Genetics in Medicine, 20(5), 531-535.
Parkman, A. A., Foland, J., Anderson, B., Duquette, D., Sobotka, H., Lynn, M., … & Cox, S. L. (2015). Public awareness of genetic nondiscrimination laws in four states and the perceived importance of life insurance protections. Journal of genetic counseling, 24(3), 512-521.
Tenenbaum, J. D., & Goodman, K. W. (2017). Beyond the Genetic Information Nondiscrimination Act: ethical and economic implications of excluding disability, long-term care and life insurance. Personalized medicine, 14(2), 153-157.
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