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Sickle Cell Anemia: Ethical Considerations
The only known cure for sickle cell disease is hematopoietic stem cell transplant (HSCT). Survival rates after HSCT are high, almost 100%, with cure rates of more than 90% (Nickel, Hendrickson & Haight, 2014; Nickel & Kamani, 2017). To receive HSCT most successfully, the donor is ideally a HLA-identical sibling. This raises several ethical concerns. The most pressing of all ethical concerns related to HSCT is whether the procedure should be offered to children with “less severe” cases of sickle cell disease (Nickel, Hendrickson & Haight, 2014; Nickel & Kamani, 2017). Less severe cases have been defined as those that do not have overt complications. However, Nickel, Hendrickson & Haight, (2014) point out that many “less severe” cases may become more severe over time, compelling healthcare workers to offer HSCT to all children with sickle cell disease. The same issue of access to HSCT is related to adult cases of sickle cell, cases from low income countries, or cases where the potential recipient has “social problems” that might significantly impact health outcomes (Nickel & Kamani, 2017). Another potential ethical issue has to do with the deliberate use of reproductive technologies to create the HLA-identical donor (Nickel & Kamani, 2017). Healthcare workers should take care to preserve...
Resources are scarce with HSCT, until new research in cryobiology and cryopreservation reduces the ethical and financial burden, as well as the physical and psychological burden of donor transplants.
Genetics for Improving Health Outcomes
Sickle cell disease is “characterized by a single point mutation in the seventh codon of the ?-globin gene,” (Hoban, Cost, Mendel, et al, 2015, p. 2597). As a genetic condition, sickle cell disease is responsive to genetic interventions. Few have been widely tested. One study shows the potential efficacy for zinc finger nucleases (ZFNs) to “precisely cleave and disrupt the erythroid enhancer of the BCL11A gene,” (Holmes, Reik, Rebar, et al, 2017, p. 2066). However, few studies offer promising solutions for reducing overall costs of treatment, with HSCT remaining the only viable intervention. The cultivation of specialized stem cells for the treatment of sickle cell disease may be on the horizon, but in the meantime, cryopreservation of patients’ oocytes is a means of at least preserving the patient’s fertility after treatment for the disease (Lavery, Islam, Hunt, et al, 2016). Genetic testing may also help reduce…
References
Hoban, M.D., Cost, G. J., Mendel, M, C., et al (2015). Correction of the sickle cell disease mutation in human hematopoietic stem/progenitor cells. Blood 2015(125): 2597-2604.
Holmes, M.C., Reik, A., Rebar, E.J., et al (2017). A potential therapy for beta-thalassemia (ST-400) and sickle cell disease. Blood 2017(130): 2066.
Lavery, S.A., Islam, R., Hunt, J., et al (2016). The medical and ethical challenges of fertility preservation in teenage girls. Human Reproduction 31(7): 1501-1507.
Nickel, R.S., Hendrickson, J.E. & Haight, A.E. (2014). The ethics of a proposed study of hematopoietic stem cell transplant for children with “less severe” sickle cell disease. Blood 2014(124): 861-866.
Nickel, R.S. & Kamani, N. (2017). The ethics of hematopoietic stem cell transplantation for sickle cell disease. In Meier E., Abraham A., Fasano R. (eds) Sickle Cell Disease and Hematopoietic Stem Cell Transplantation, Springer, pp. 199-219.
[Harvard University] it is observed that younger patients are much better than adults in post transplantation recovery and Current statistics project a more successful picture with a reduced mortality rate for bone marrow transplantation at 5%. Also, this is a relatively new procedure with a total of only 200 people with the sickle cell disease having undergone it. [Debby Golonka] Gene Therapy With the advancements in genetic science the search for
III. Considering Current Challenges As noted during the introductory chapter of this proposal, children routinely note how their parents cope with pain; their particular pain coping styles. During the implementation of this proposed study, this researcher expects to create a questionnaire... exploring the way parents of adolescents afflicted with SCD personally handled their pain. Both parents and adolescents will be solicited to contribute to the following components will the condensed/adapted to
Another symptom that is often found is a yellowing of skin and eyes; this is a sign of jaundice due to the breakdown of red blood cells. Another sign is that children may show delayed growth and development. (Genetic Disease Profile: Sickle Cell Anemia) One of the aspects that problematizes this disease are the complications that can arise as a result of the lowering of body defenses and the increased
If there is evidence of the sickle cell gene the tests will be repeated to confirm diagnosis (NIH). It is also possible to test the fetus for sickle cell anemia prior to birth through amniocentesis although this is not normally performed unless there is reason to believe the child will have sickle cell anemia due to the risk which this procedure presents to the fetus. Electrophoresis is performed on
As shown in Part 1 of the Case Report, sickle cell anemia is one of the highly prevalent diseases in today’s society. This disease is a disorder of the blood brought by the inheritance of the gene that changes the shape of the sickle cell. The case provides significant insights regarding this blood disorder through examining the various issues relating to sickle cell anemia. One of the most crucial aspects
Nurses Perception: Effects of the New Sickle Cell Disease Program on the Management and Care Ofadults With Sickle Cell Disease Description of the relationship between extant literature and the hypothesis Description of the research design Description of research methodology Description of study subjects Description of Instrumentation or Treatment Description of data collection procedures Nurses Perception: Effects of the New Sickle Cell Disease Program on the Management and Care of Adults with Sickle Cell Disease. The purpose of this