DNP 801 Topic 8 DQ1
Topic 8: Ethical and Legal Considerations
Objectives
1. Identify ethical, ethnic/ancestral, cultural, religious, legal, fiscal, and societal issues related to genetic and genomic information and technologies.
2. Define issues that undermine the rights of all clients for autonomous, informed genetic- and genomic-related decision making and voluntary action.
Topic 8 DQ 1
Choose a news story, published within last 2 years, about genetic or genomic technology. What is the issue presented? From the perspective of an RN or APRN, what are the ethical, cultural, religious, legal, fiscal, and societal implications of the issue? Explain. Support your rationale
with a minimum of two scholarly sources.
Topic 8 DQ 2
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.
Case Study – Cumulative:
Part 4
You will be creating a case study in stages over four course topics. This assignment will add to your previous work in Topic 5. Use an example from your own personal practice, experience, or own personal/family (however, simulated cases are not acceptable for practice immersion hours and therefore not acceptable for this assignment). Examples might include a patient with Duchesne’s muscular dystrophy, Huntington’s disease, Down’s syndrome, sickle cell anemia, BRCA 1 or BRCA 2 mutations, or another genetic disorder that you or the organization you practice in may specialize in treating.
General Requirements:
Use the following information to ensure successful completion of the assignment:
- This assignment uses a rubric. Please review the rubric prior to beginning the assignment to become familiar with the expectations for successful completion.
- Doctoral learners are required to use APA style for their writing assignments. The APA Style Guide is located in the Student Success Center.
- This assignment requires that at least two additional scholarly research sources related to this topic and at least one in-text citation for each source be included.
- You are required to submit this assignment to Lopeswrite. A link to the Lopeswrite technical support articles is located in Class Resources if you need assistance.
Directions:
For this assignment (Conclusion of the Case Study), include Parts 1-3 of the Case Study in one document, combined with additional genetics information learned from the assigned readings from all course topics. This assignment is a cumulative combination of selected portions of Parts 1-3 and Part 4. Make sure you have incorporated any faculty feedback received from previous reports.
Parts 1-3:
Do not simply copy/paste entire case reports from Parts 1-3. Create a document including only the following areas from previous case reports:
1. Describe the disease, its prevalence, its incidence, and general knowledge of the disease.
2. Discuss the laboratory testing that can be done.
3. Describe if chromosomal analysis is/was indicated and detail the chromosomal change that caused the disease if it is a chromosomal disorder.
4. Describe the disorder in terms of its origin as either a single gene inheritance or a complex inheritance and considerations for practice and patient education.
5. Describe the gene mutation of the disease, as well as whether it is acquired or inherited, and how the mutation occurs.
6. Examine how genetics can influence policy issues.
7. Discuss any nutritional influences for this disease.
8. Process of nutritional assessment and counseling as it relates to health, prevention, screening, diagnostics, prognostics, selection of treatment, and monitoring of treatment effectiveness.
Part 4:
In addition, this cumulative case study must include the
following:
1. Discuss any ethical considerations for this disease.
2. Compare how genetics can improve care and health outcomes while reducing cost to usual practices.
3. Discuss the changes in approaches to care when new evidence warrants evaluation of other options for improving outcomes or decreasing adverse events.
4. Create a plan for how you might educate colleagues or patients on this genetic disorder.
Sample 1 Topic 8 DQ1
COVID-19 has been at the top of many discussions and new stories since its breakthrough in 2019. Recently, Medical Press (2022) releaseda story regarding genetic variations play a role in how COVID-19 affects every individual. Researchers have identified DNA mutations that can alter protein expression. The two mutations found are ACE2 and TMPRESS2, in which both
provide entry points for COVID-19 to enter a host. The information discovered can be utilized with DNA sequencing to identify sequence variants of these genes as a diagnostic approach to discovering severity of the disease (Zhang et al., 2022).
As seen within many hospital settings and on the news, COVID-19 has affected millions of people in various ways. There is the population that has few to little symptoms (and may even be asymptomatic) in comparison to those who are very ill and require hospitalization, mechanical ventilation, and have passed away. Regarding ethical, legal, cultural, and religious implications, DNA sequencing should never be completed without the consent of a patient. There are some individuals who already refuse COVID testing and refuse to believe in COVID therefore the information shared regarding DNA mutations should be approached in a professional manner and should end when a patient declines further information. There are many societal implications regarding Coronavirus that can stem an issue between the healthcare providers and the patient, therefore, conversations should be started with open-ended questions to allow the patient
to discuss their beliefs of the disease.
References
Mayo Clinic. (2022, July 25). Researchers pinpoint genetic variations that might sway course of
COVID-19. Medical Xpress – medical research advances and health news. Retrieved July 28, 2022, from https://medicalxpress.com/news/2022-07-genetic-variations-sway-covid-.html
Zhang, L., Sarangi, V., Liu, D., Ho, M.-F., Grassi, A. R., Wei, L., Moon, I., Vierkant, R. A., Larson, N. B., Lazaridis, K. N., Athreya, A. P., Wang, L., & Weinshilboum, R. (2022). ace2 and tmprss2 SARS-COV-2 infectivity genes: Deep mutational scanning and characterization of missense variants. Human Molecular Genetics. https://doi.org/10.1093/hmg/ddac157
Sample 2 Topic 8 DQ1
The story published within last 2 years, about genomic technology is, a study of an investigational gene therapy for sickle cell disease has found that a single dose restored blood cells to their normal shape and eliminated the most serious complication of the disease for at least three years in some patients. Sickle cell disease is caused by mutations in the beta-globin gene, leading to the production of abnormal hemoglobin, the oxygen-carrying molecule in red blood cells. Normal
red blood cells are shaped like donuts, but in sickle cell disease, the abnormal hemoglobin causes red blood cells to stiffen and adopt a spiky, sickle-like shape. Sickle cell conditions are inherited from parents in much the same way as blood type, hair color and texture, eye color and other physical traits. The types of hemoglobin a person makes in the red blood cells depend upon what hemoglobin genes the person inherits from his or her parents. Like most genes, hemoglobin genes are inherited in two sets, one from each parent.
Four patients at NewYork-Presbyterian/Columbia University Irving Medical Center participated in
the multicenter study, the first to report on such long-term outcomes of a sickle cell gene therapy. The single-dose therapy, tested on 35 adults and adolescents with sickle cell disease, essentially corrected the shape of the patient’s red blood cells, but also completely eliminated episodes of severe pain, caused when rigid, crescent-shaped red blood cells clump together and block blood vessels. The painful episodes often result in widespread organ damage. Such episodes are a frequent cause of emergency department visits and hospitalizations and lead to early death.
Care providers who manage patients with sickle cell disease (SCD) often face several ethical questions. Most prominent among these pertain to the importance of pain and its treatment. People with SCD suffer from a high incidence of social and behavioral health complications. Anxiety and depression have also been reported to be high in these patients. In addition, social and behavioral health complications can occur throughout life.
A nurse’s comprehensive pain assessment, noting location, intensity, and duration of the pain episode, is invaluable. Other nonpharmacological therapies frequently used in SCD include cognitive behavioral therapy, biofeedback, prayer, relaxation techniques, acupuncture, hypnosis, and herbal therapies. Nurses should also assess patients for behavioral health complications to identify those who may benefit from social work, psychiatric, or case management referral. Patients should also be screened for depression, anxiety, and other social and behavioral determinants of health. When possible, nurses should refer patients with such complications to the social worker or case manager, who may be able to guide them in seeking extra support. A strong social support network is key to effective disease management and to a good quality of life in those with sickle cell disease.
References
Tanabe, Paula PhD, RN; Spratling, Regena PhD, RN; Smith, Dana BSN; Grissom, Peyton BSN; Hulihan, Mary DrPH. CE: Understanding the Complications of Sickle Cell Disease. AJN, American Journal of Nursing: June 2019 – Volume 119 – Issue 6 – p 26-35 doi: 10.1097/01.NAJ.0000559779.40570.2c
Columbia University Irving Medical Center. (2021, December 13). Experimental gene therapy reverses sickle cell disease for years. ScienceDaily. Retrieved July 30, 2022 from www.sciencedaily.com/releases/2021/12/211213160126.htm
Sample 1 Topic 8 DQ2
One of the primary and common issues undermining a client’s rights to make some genetic and
genomic-related decisions is storing and using the patient’s samples for unspecified research. In addition, another issue undermining the client’s right to make some genomic and genetics-related decisions is the sequencing of the collected data and then sharing it with a third party (Davis, 2019). The last two issues undermine the validity of the patient’s consent as the healthcare settings do not provide clear and sufficient information to the patient about the act of conducting unspecified research or sharing data with a third party.
The solution to using patient data without consent can be addressed by the healthcare institutions
having policies that improve transparency regarding handling the patient’s samples and data. For the issue related to the use of information in the healthcare setting by sharing with a third party, the solution can entail having a clear and explicit consent process for all the research activities (Ogbogu & Ahmed, 2022). With the consent process, the patient will be in the best position to determine if their data samples should be used for research or not.
As a patient advocate, the issues about their consent and privacy of data and the later use by a healthcare setting for research should be discussed with the patients so that they know the risks and the benefits associated with the processes. For the share of data with a third party without consent, as a patient advocate, ensuring that the patients are aware of the relevant legal, ethical, and social issues in genetics will also address the patient’s concerns and the questions that may arise regarding of the problem.
References
Davis, L. (2019). Stewards Of The Genome: Ethical Issues Related To Data Privacy And Sharing In Psychiatric Genetics Research. European Neuropsychopharmacology, 29, S1049. https://doi.org/10.1016/j.euroneuro.2018.07.060
Ogbogu, U., & Ahmed, N. (2022). Ethical, Legal, and Social Implications (ELSI) Research: Methods and Approaches. Current Protocols, 2(1). https://doi.org/10.1002/cpz1.354
Sample 2 Topic 8 DQ2
Jennifer Kahn of the New York Times wrote about how a new genetic engineering technology could help eliminate malaria and stave off extinctions if humanity decides to set it free. The story revolves around Anthony James, a biologist whose area of scientific expertise is an ambiguous but powerful invention called a gene drive. Kahn writes about how Malaria researchers have spent about two decades trying to create gene drives to curb malaria, but no researcher successfully made them work effectively. In his ten years of trial, Anthony managed to increase the possibility that a trait would be inherited by just 1 or 2% (Kahn, 2020). Then, nearly by chance, a new development transformed the gene drives from a backwater science into a vanguard technology. Gene drives are the latest in a series of new genetic tools developed to improve the environment and people’s lives.
Ethical implications related to the gene drives include whether the engineered flies can be used as a weapon by sabotaging the pollinators that support agriculture or altering the genes of innocuous wild insects so that they can transmit disease (Küchenhoff et al., 2022). Cultural implications include whether the technology is culturally appropriate for the people it is meant to help since the gene drive will be used in Burkina Faso. Besides, religious implications include religious groups
having differing opinions on whether genes should be transferred from one organism to another to prevent the spread of malaria (Modell et al., 2019). Populism is fast growing; fewer people are willing to trust regulators’ and scientists’ judgment, as well as the rhetoric around complex innovations is becoming increasingly polarized.
Legal implications may arise if the gene drive causes safety issues to people, animals, and agricultural produce in the areas where the engineered flies will be released. The engineered flies could cause other unforeseen diseases to people and animals, leading to legal issues on whether safety was prioritized in the gene drive (Küchenhoff et al., 2022). Furthermore, fiscal implications may arise in the production of the engineered flies. Inadequate finances may result in the scientists failing to eliminate malaria in the targeted areas. Lastly, societal issues may arise if individuals living in the areas where the engineered flies will be released are not informed beforehand, and the scientists fail to seek consent.
References
Kahn, J. (2020, January). The Gene Drive Dilemma: We Can Alter Entire Species, but Should We? The New York Times Magazine.
Küchenhoff, S., Doerflinger, J., & Heinzelmann, N. (2022). The genetic technologies questionnaire: lay judgments about genetic technologies align with ethical theory, are coherent, and predict
behaviour. BMC medical ethics, 23(1), 1-14.https://doi.org/10.1186/s12910-022-00792-x
Modell, S. M., Citrin, T., Burmeister, M., Kardia, S. L., Beil, A., & Raisky, J. (2019). When genetics meets religion: What scientists and religious leaders can learn from each other. Public Health Genomics, 22(5-6), 174-188. https://doi.org/10.1159/000504261.
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