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Assignment Due: July 5/2020 @ 10am Outline and Reference Your case study outline is due to me by 7/5. This is a group assignment so just submit one copy per group. Produce an Outline for the Scholarly Paper using APA format. Reference page in the APA format. Articles in the Reference are the ones you will use in the Scholarly Paper. Reference at least 5 Articles 5 years or newer and authored by US authors. From Week 2 Discussion Explain how genetics and genomics influences health and healthcare. Discuss how the ethics and social justice interact with the application genetics and genomics. Here is where to start: https://www.genome.gov/27552451/what-is-genomic-medicine/

ESSAY OUTLINE: TOPIC: Ethical Issues in Genetic Testing in Pediatrics I. Introduction: Explain Genomics and how it is used in Pediatrics - Talk about significance, methodology, purpose etc. - Also, introduce ethics and standard of practice when it comes to Genomics/ Genetics; identify the nurse’s role in genetic testing - https://www.nature.com/subjects/genomics - https://www-sciencedirect-com.libproxy.fullerton.edu/science/article/pii/S0260691716300764

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Thesis statement: Through analyzing ethical issues in genetic testing of Pediatrics, nurses can work to overcome this problem by educating and advocating for patients. (Just an example)

II. Topic Sentence 1: Ethical Issues A. Consent a. In genetic testing, some providers do not notify or inform the parents about the testing that they are doing on the children; they believe that their actions are justified through implicit consent because it is done in the interest of the child. Is this OK? Is this ethical? - Ethical reasons for genetic testing must be incorporated to avoid violations in patient rights. These patient rights can be protected by following the standards of care created by the Joint Commission. For example, hospitals must respect the patient’s right to receive information in a manner he or she understands (___, 2020). Also, hospitals must respect the patient’s right to participate in decisions about his or her care, treatment, and services (___, 2020). Therefore, in order for the genetic testing of pediatrics to be ethical, healthcare professionals must follow regulations set by the JC when deciding patient treatments. 1. Discuss the nurse’s code of ethics and the role of the nurse in informing patients and everyone involved about the procedures that are done 2. What is implicit vs explicit consent? What procedures require consent and which do not? Why is consent important in genetics? When it comes to the topic of consent, it is important to consider patient rights. Patients have the right to informed consent (the patient is aware that they are going to undergo Tx; doctor gives official consent; they have to sign a procedural consent with all the risks if they having surgery), refusal of treatment (they have the right to refuse), advanced directives (incapacitated, someone making decisions for you), confidentiality (what happens in hospital stays in hospital), information security (info must be secured) ^^need to find an article for this information^^ 3. https://bmcmedgenomics.biomedcentral.com/articles/10.1186/s12920-0170247-4

4. Ex: Newborn screening testing that is done on dried “blood spots” of infants. Typically, information is provided to parents through a brochure, but most parents will not read the information nor understand the process and procedure of this test. This test is mandated in 43 states! 5. Sometimes the process of consent is ignored due to the tedious process of having to fill out paperwork for parents who want to opt-out of newborn screening tests. B. Management and storage of genetic information a. After children and newborns are genetically tested, healthcare facilities are left with private and personal genetic information that can be used to identify and reveal information regarding the child. 1. When newborns undergo the newborn screening test, a blood sample is taken from the infant, normally more than enough is taken. Enough to run the necessary tests, and the additional blood spots are saved for quality insurance, forensic use, medical research, etc. 2. Is it ethical to keep information and use it to gather more data regarding conditions that children may have or develop? When information is stored it could be possibly misused in discriminatory ways, such as in job opportunities and insurance purposes in adulthood. 3. One realistic option would be to return the information back to the patients in an appropriate manner. Parents should have a choice in deciding whether they want their child’s blood to be kept for research purposes. 4. https://bmcmedgenomics.biomedcentral.com/articles/10.1186/s12920-0170247-4 5. https://www.cell.com/ajhg/fulltext/S0002-9297(15)00236-0 C. Genetic Testing of Pediatrics plays a harmful role in the adoption process a. The information that is kept from newborn screening tests can be harmful in the future if the information is misused. It can affect adoption rates for newborns, there is so much uncertainty in genetic testing that it can be misleading for prospective adoptees. 1. Is it appropriate/ethical to test children for genetic health conditions if they come from a family with a history of health diseases? When children are tested and if they are identified with a chromosomal abnormality, it can be concerning and stigmatizing. 2. What is the goal of genetic testing in adoptions? This is a problem because it deters adoptions especially in children with suspected chromosomal abnormalities. With the use of genetic testing in adoption, it discriminates against certain children. Does the benefit outweigh the concerns? 3. Would you do genetic testing only on children who exhibit signs and symptoms of abnormality? Or would you test children who have a family

history of a health condition as well? 4. This is an issue of concern because there is no clear medical benefit in testing these community of children, it decreases their autonomy, and potentially hinders their future 5. https://adc.bmj.com/content/105/1/74 D. Despite the many ethical issues that surround genetic testing of pediatrics, these issues can be alleviated through proper education and advocating for patients. 1. Through genetic testing, we can identify health conditions and can refer them to the right resources. III. Topic Sentence 2: Nurses can solve these problems with a thorough education A. Educating the nurses a. In order for nurses to be able to provide thorough information to patients, they themselves must have a clear understanding of what genetic testing is. Nurses that are familiar and comfortable with genetic testing can provide better quality care to patients. 1. http://search.ebscohost.com.lib-proxy.fullerton.edu/login.aspx? direct=true&db=rzh&AN=144222325&site=ehost-live&scope=site 2. An educational intervention for perinatal and pediatric nurses that demonstrated increased genetic knowledge of patients and families. 3. One way of educating nurses to become more proficient in the field of genetics and genomics is through the use of seminars. Although a single educational seminar was insufficient, it is useful in developing educational materials for both students and nurses. B. Educating the patients a. Part of the nursing role in educating is being knowledgable and skilled in the area of genetic testing/ genomics. In order to effectively teach, nurses should understand the laws surrounding genetic testing as well as the risks, benefits, and alternatives. The solution to improving patient knowledge involves nurses becoming more familiar with what genetic testing entails and logistics. Nurses who don’t understand issues within genetic testing, find it difficult to provide adequate patient care. Education involves understanding what the family’s learning needs are and providing adequate information for decision making. 1. https://www-sciencedirect-com.libproxy.fullerton.edu/science/article/pii/S0260691716300764 ^^how nurses need to strengthen their education on genetic testing in order for it to benefit others and to enhance their knowledge 2. Nurses need to be knowledgeable in genetics and genomics in order to be able to incorporate it into future care. Educating patients about their genetics is a scope of practice that requires health professionals to have specialized education, training and

experience in medical genetics and counseling (Higgins, 2018). According to Higgins (2018), educating patients involves being able to interpret family and medical histories, provide resources to promote adaptation to their conditions, and to assess the chance of disease occurrence or recurrence. This helps patients understand and adapt to the implications of genetic contributions to disease (Higgins, 2018).

3. Through education, nurses can identify any issues that patients and families are facing regarding genetics and work to effectively resolve them. https://ghr.nlm.nih.gov/primer/dtcgenetictesting/dtcinsurancerisk 4. Nurses should know basic healthcare policies to educate parents about possible misinformation or concerns. 5. Allows the parents to understand their options thoroughly and gives confidence in their choices. Transition 1. In addition to ___ IV. Topic Sentence 3: Nurses solve these problems through advocating A. Support 1. https://journals-sagepub-com.libproxy.fullerton.edu/doi/full/10.1177/0969733018767248 2. Detail/example/etc. 3. B. Support 1. https://bmcmedgenomics.biomedcentral.com/articles/10.1186/s12920-017-0247-4 2. In order for nurses to properly advocate for patients and their families, they must be knowledgeable regarding genomic health disorders. The American Association of Colleges of Nursing states the baccalaureate nursing programs prepare graduates to advocate for patients and their families with genomic health issues, including providing genetic counseling. 3. Detail/example/etc. C. Support 1. Detail/example/etc. 2. Detail/example/etc. 3. Detail/example/etc. D. Transition V. Discussing benefits of Genetic Testing in Pediatrics VI. Conclusion - Re-state thesis: Summary of main points, return to general context, wrap-up of essay, etc

References - https://adc.bmj.com/content/105/1/74 Arribas-Ayllon, Michael, Clarke, Angus, & Shelton, Katherine. (2020). Professionals’ accounts of genetic testing in adoption: A qualitative study. Archives of Disease in Childhood, 105(1), 74. - https://www.cell.com/ajhg/fulltext/S0002-9297(15)00236-0 Botkin, Jeffrey R, Belmont, John W, Berg, Jonathan S, Berkman, Benjamin E, Bombard, Yvonne, Holm, Ingrid A, Levy, Howard P, Ormond, Kelly E, Saal, Howard M, Spinner, Nancy B, Wilfond, Benjamin S, McInerney, Joseph D. (2015). Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents. The American Journal of Human Genetics, 97(3), 501. https://www-sciencedirect-com.libproxy.fullerton.edu/science/article/pii/S0260691716300764 Camak, D. J. (2016). Increasing importance of genetics in nursing. Nurse Education Today, 44, 86-91. -

- https://bmcmedgenomics.biomedcentral.com/articles/10.1186/s12920-017-0247-4 Friedman, Jan M, Cornel, Martina C, Goldenberg, Aaron J, Lister, Karla J, Sénécal, Karine, & Vears, Danya F. (2017). Genomic newborn screening: Public health policy considerations and recommendations. BMC Medical Genomics, 10(1), 9. - https://ghr.nlm.nih.gov/primer/dtcgenetictesting/dtcinsurancerisk Genetics Home Reference. (2020). Can the results of direct-to-consumer genetic testing affect my ability to get insurance? U.S. National Library of Medicine. Retrieved July 1, 2020, from https://ghr.nlm.nih.gov/primer/dtcgenetictesting/dtcinsurancerisk We might not use this reference about insurance anymore to avoid swaying from the topic of genetic testing pediatrics -

http://search.ebscohost.com.lib-proxy.fullerton.edu/login.aspx? direct=true&db=rzh&AN=144222325&site=ehost-live&scope=site Murakami, K., Kutsunugi, S., Tsujino, K., Stone, T. E., Ito, M., & Iida, K. (2020). Developing competencies in genetics nursing: Education intervention for perinatal and pediatric nurses. Nursing & Health Sciences, 22(2), 263–272. https://doi-org.lib-proxy.fullerton.edu/10.1111/nhs.12680 - https://www.nature.com/subjects/genomics Nature. (2020). Genomics. Springer Nature Limited. Retrieved July 01, 2020, from https://www.nature.com/subjects/genomics We might paraphrase definition of genomics so we won't have to use this anymore either

Week 6 assignment rubric = outline and references

Week 7 assignment rubric = thesis development

Week 8 assignment rubric = discussion/implication for nursing

Week 9 assignment rubric = group presentations

Week 10 assignment rubric = scholarly paper final rubric...