Individuals with sickle cell anemia face a shortened life expectancy, excruciating and incapacitating side effects, as well as a diminished aspect of quality of life(McCormick and Calzone, 2016). The scope of genetic counseling is one of the ethical considerations of sickle cell anemia. Genetic counseling has been studied as one of the ways which effectively addresses this disease. However, genetic counseling comes with a risk in terms of disclosure of patient genetic information which questions the necessity of counselors to be non-directive in the duties. Also, pain management in patients with sickle cell anemia falls under the domain of ethics. In treating sick cell anemia patients, healthcare providers need to identify the moral situation before making decisions based on perceptions, misconceptions, and circumstances. Prenatal Diagnosis and Abortion of affected fetuses present another ethical consideration for sickle cell anemia, with the pro-life and pro-choice debates on the value of life and healthy life respectively (Fadare, 2009).
How Genomics Improves Care
Sickle cell anemia patients experience varying degrees of pain. With this in mind, it is possible that pain variability in inpatient is influenced by genes (Adegbola, 2011). Genetics influences of pain genes can prompt research into pain experiences. Developing research may clarify the heterogeneity of incessant pain research among those with sickle cell anemia and other interminable pain disorders. With critical disclosures of how qualities and allelic varieties can balance pain affectability and variety among people, it might become routine practice, later on, to screen people with interminable pain for hereditary susceptibility, and thus give customized care as well as treatment comparative with a person’s hereditary inclination (Adegbola, 2011). With personalized care, not only will there be an improvement in the quality of care for sickle cell anemia patients, but also treatment costs are meant to go down for sickle cell anemia patients.
Changes in Approaches to Care
The objectives of any healthcare organization are to improve life expectancy and wellbeing coupled with personal satisfaction. Major clinical trials in sickle cell anemia have developed toward the documentation of those results. As more trials reported consequences for all-out mortality, some astounding outcomes rose. Therefore, clinicians face moral predicaments when directing their patients with sickle cell anemia on whether to seek HCT, which is at present the main potential treatment for the disease, which nonetheless, is associated with mortality. Most of the changes in sickle approaches are designed to modify risk factors at the expense of quality of life and life expectancy although the disease is associated with lowered life expectancy. Despite the fact that change in risk factor alteration is relied upon to improve results, research of expanded life span is fundamental. Estimation of mortality as an endpoint necessitates long-length trials that can bring about more noteworthy costs(National Heart Lung and Blood Institute, 2011).
Educating individuals, friends, and colleagues about the sickle cell is important since most people are unaware of the genetic susceptibility of the disease. One of the instructive ways to educate them is by having open seminars where the disease is described in detail. Explanations on its pathophysiology, symptoms, and treatment interventions explained in detail as well. Also, having brochures with brief information such as who gets the disease, its prevalence, symptoms, how to prevent complications, among other relevant information about the disease given to them, will be another strategy to educate the audience about sickle cell anemia. Also, inviting friends and colleagues to sickle cell anemia conferences is another way to educate and create awareness among them as it gives them an opportunity to interact with physicians and other specialists with more information about the disease.
Adegbola, M. (2011). Genomics and pain research in sickle cell disease: an explanation of heterogeneity?. ISRN Nursing, 2011.
Fadare, J. O. (2009). Some ethical issues in the prenatal diagnosis of sickle cell anemia. Annals of Ibadan postgraduate medicine, 7(2), 26-28.
McCormick, K. A., & Calzone, K. A. (2016). The impact of genomics on health outcomes, quality, and safety. Nursing Management, 47(4), 23.
National Heart Lung and Blood Institute. (2010). Sickle cell disease, awareness, and education strategy development workshop report. NIH Publication No. 56-205N) Bethesda, MD: US Department of Health and Human Services.
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