ElSI Pro/Con Paper On Genetic Testing For Disease without Cures On Pediatric Patients Research Paper

ElSI Pro/Con Paper On Genetic Testing For Disease without Cures On Pediatric Patients Research Paper

ElSI Pro/Con Paper on Genetic Testing for Disease without Cures on Pediatric Patients

The paper presents an essential argument regarding genetics and genomics testing for diseases without cure in pediatric patients. Genetic testing for pediatric patients continues to elicit mixed feelings among different stakeholders in healthcare. Every new genetic test created brings about serious issues to public health, medicine, and social policy concerning the circumstances through which the test information should be used (Ascencio-Carbajal et al., 2021). In addition, it becomes controversial about ways of implementing the tests and how the results will be communicated or used. It still raises concerns about whether parents should be given a chance to access the result or not and whether the test should be mandatory as it is in some states. Also, there are issues about the people who are supposed to receive the genetic test results such as the third parties including insurance firms, and employers, and if there are mechanisms to ensure these children and their families are treated fairly (Staley et al., 2021). Genetic and genomic testing can, therefore, cause comfort and also considerable anxiety among families of pediatric patients and thus it is critical to consider the ethical, legal, and social implications of genetic testing for pediatric patients for diseases such as cancer that have no cure ElSI Pro/Con Paper On Genetic Testing For Disease without Cures On Pediatric Patients Research Paper.

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Pros of Genetic testing for disease without cures in pediatric patients

Genetic testing for pediatric patients against diseases without cures is a sensitive area and requires informed decisions from both the family and the clinical side (Staley et al., 2021). Genetic testing in children raises crucial concerns about the pediatric patient’s life in the present and the future. While deciding to test these patients, Goldenberg et al. (2019) states that there is a need to consider several aspects such as the risk of knowing, benefits, and unique features of the condition, and also it is important to think about the available alternatives for management, therapeutic, and palliative interventions.

According to Staley et al. (2021) genetic testing among pediatric patients is essential in enhancing the management of the disease. This is because a child at risk of suffering from an incurable disease will be well managed when the test results detect the disease early in life. This will timely inform the disease management protocols for better care. For instance, parents of children with a strain of cancer can start evaluating treatment procedures of methods such as chemotherapy treatment early and this may help in managing the disease and preventing it when it occurs. In addition, having the right and a standard genetic test for the children helps the doctor to provide medical advice to families and also recommends diverse models of treatment to be applied.

Goldenberg et al. (2019) believes that genetic testing for pediatric patients helps in lifestyle changes and disease prevention. For instance, if a parent realizes that their child has a certain incurable disease they can be able to make lifestyle and behavioral changes early that may help reduce the risks associated with the disease. For instance, families can ensure the food given to patients is well balanced for prevention purposes. Further, parents and families who have taken their children for genetic testing have less stress after knowing that their child does not have the genetic disease (Kanungo et al., 2020). This reduces the fear that parents have and makes them confident and more protective of children against any kind of exposure.

Cons on Genetic testing for diseases without cures on pediatric patients

Garrett et al. (2019) observes that genetic testing among pediatric patients which turns positive for incurable diseases increases stress on families. A positive test indicates that a child is at a greater risk of suffering from the disease. Such results cause worries to the families as they try to reflect on the cause and the management ways of the disease when it is finally revealed. In addition, the knowledge that a child has a positive genetic illness or incurable disease can bring more suffering to the family such as stress, depression, and also other complications (Staley et al., 2021). The family might spend a lot of resources in trying to find the solution to the illness hence affecting their socioeconomic wellbeing.

Ascencio-Carbajal et al. (2021) observes that ethical concerns are critical in the field of genetic testing. Genetic testing for pediatric patients is a bad because in most instances the children patients have little knowledge of their conditions. They do not have consent and the results of the test are shared with parents and families. The lack of confidentiality can be a huge problem for the child as they grow since they may face discrimination and stigma from family and friends who knows about their impending condition (Garrett et al., 2019). In addition, it is important to note that positive genetic results do not always mean that a patient will automatically suffer from the disease. They are only used to detect the genetic strains that are strongly related to certain diseases. Thus, children may face unnecessary fear and discrimination for illnesses that will never occur. In an effort to protect patients from unethical treatment Congress came up with the Genetic Information Nondiscrimination Act of 2008 (Kanungo et al., 2020). The act strongly prohibits health insurance and employers from using genetic results in discriminating against patients and their children for health cover ElSI Pro/Con Paper On Genetic Testing For Disease without Cures On Pediatric Patients Research Paper.

Genetic testing is not important as it demotivates parents and makes childcare problematic. This is because parents may not be willing to take their children to school when they know they have a certain illness and this would affect the life of a child (Garrett et al., 2019). In addition, genetic testing may lower the self-esteem of a child when they finally learn about their conditions. In most instances, some may feel that their rights were violated as they were never given a chance to decide whether to get tested or not. Ascencio-Carbajal et al. (2021) believes that it is not necessary to genetically tests pediatric patients first because they do not have the consent to the process and also because when results turn positive there is no cure for the illnesses to be identified.

Reflection on Personal View of the Genetic testing for disease without cures on pediatric patients

After evaluating the arguments on both the pro and the cons side, I support the pro side that there is a need for genetic testing for diseases without cures in pediatric patients. According to the pro authors, it is evident that there is a significant need to identify a given genetic illness early in life for better management. In addition, the parents will be able to find management strategies for the genetic illness early and also set aside resources to manage the disease even if it finally occurs. Also, the knowledge of the certain condition in pediatric patients helps in behavioral and lifestyle changes which helps in reducing the changes occurrence of the illness. For instance, the parents will ensure there is a balanced diet and little exposure of the child to environmental factors that may aggravate the disease.

Summary and relevance for nursing practice

The pros and cons were critical and reflect on an important aspect of the healthcare and nursing practice. The genetic testing for diseases without cure in pediatric patients emerges to have ethical, legal, and social implications for families and children later in life. On one hand, it is important to have children have genetic testing as this enables the parents to timely change their lifestyle, and behavior and also helps in finding health insurance coverage and resources to handle the disease when it occurs. On the other hand, some authors have opposed the aspect of genetic testing because it only brings discrimination to children and also it brings stress and hopelessness to families.

The first recommendation to nurses when faced with families concerning genetic ethical issues is to practice shared decision-making with parents and families. Nurses should be able to include parents in making a decision regarding children who turns positive for genetic testing for incurable illness. They should be able to inform parents that positive results do not always mean that the patients will develop these diseases in life. A second recommendation is that nurses should address the issue of patient privacy and confidentiality (Kanungo et al., 2020). The nurses should inform the parents before and after the genetic test about the implications of the results and the ethical, legal, and social implications to the child and family.

References

Ascencio-Carbajal T, Saruwatari-Zavala G, Navarro-Garcia F, Frixione E. (2021). Genetic/genomic testing: defining the parameters for ethical, legal and social implications (ELSI). BMC Med Ethics; 22(1):156. doi: 10.1186/s12910-021-00720-5. PMID: 34814901; PMCID: PMC8609860.

Garrett JR, Lantos JD, Biesecker LG, Childerhose JE, Chung WK, Holm IA, Koenig BA, McEwen JE, Wilfond BS, Brothers K. (2019). Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group. Rethinking the “open future” argument against predictive genetic testing of children. Genet Med; 21(10):2190-2198. doi: 10.1038/s41436-019-0483-4. PMID: 30894702; PMCID: PMC6754817.

Goldenberg AJ, Lloyd-Puryear M, Brosco JP, Therrell B, Bush L, Berry S, Brower A, Bonhomme N, Bowdish B, Chrysler D, Clarke A, Crawford T, Goldman E, Hiner S, Howell RR, Orren D, Wilfond BS, Watson M. (2019). Bioethics and Legal Workgroup of the Newborn Screening Translational Research Network. Including ELSI research questions in newborn screening pilot studies. Genet Med; 21(3):525-533. doi: 10.1038/s41436-018-0101-x. PMID: 30100612.

Kanungo S, Barr J, Crutchfield P, Fealko C, Soares N. (2020). Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records. Appl Clin Inform;11(5):755-763. doi: 10.1055/s-0040-1718753. Epub. PMID: 33176390; PMCID: PMC7657708.

Staley BS, Milko LV, Waltz M, Griesemer I, Mollison L, Grant TL, Farnan L, Roche M, Navas A, Lightfoot A, Foreman AKM, O’Daniel JM, O’Neill SC, Lin FC, Roman TS, Brandt A, Powell BC, Rini C, Berg JS, Bensen JT. (2021). Evaluating the clinical utility of early exome sequencing in diverse pediatric outpatient populations in the North Carolina Clinical Genomic Evaluation of Next-generation Exome Sequencing (NCGENES) 2 study: a randomized controlled trial. Trials. 14;22(1):395. doi: 10.1186/s13063-021-05341-2. PMID: 34127041; PMCID: PMC8201439 ElSI Pro/Con Paper On Genetic Testing For Disease without Cures On Pediatric Patients Research Paper.

ElSI Pro/Con Paper on Genetic Testing for Disease without Cures on Pediatric Patients

Pros of Genetic testing for disease without cures in pediatric patients

Cons on Genetic testing for diseases without cures on pediatric patients

Reflection on Personal View of the Genetic testing for disease without cures on pediatric patients

Summary and relevance for nursing practice

References

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Diverse Views of Stand Alone Genetics Course in Undergraduate

Baccalaureate Nursing Programs

This paper presents information related to the diverse views of nurse educators in regard to offering genetics and genomics content within in a stand-alone genetics course or integrated within existing nursing courses. Faculty have argued on both sides of this issue without any consensus being reached to date. Since 2009, the Consensus Panel on Genetics/Genomic Nursing Competencies has called for all practicing nurses to demonstrate basic competencies in assessment, referral, and education, care, and support of patients and families dealing with a genetic or genomic disorder or condition. While the panel is clear in expecting nurses to have competencies in this unique health care area, it is less clear in advising administrators and educators of nursing program on the best course structures or teaching/learning methods to promote development of these outcomes. It is important to examine the arguments for and against stand-alone genetics courses so nursing program faculty can make informed, evidence-based curricular decisions that will best prepare their graduates to work in the genomic era of health care.

Arguments in Support of a Stand-Alone Genetics Course

Giarelli and Reiff (2012) called for nursing faculty to conduct educational research to demonstrate the best processes for educating nurses at all levels for competency in genetics and genomics. The authors posited that genetics are being shown to play a part in all diseases, and as such, must be a part of nursing curricula. The authors cited numerous ways in which genomics is essential in health promotion and treatment of disease. Additionally, Giarelli and Reiff noted that the public will look to nurses and other health care professionals to help them understand genetic and genomic information as it will be overwhelming in both amount and complexity. The authors strongly assert that nurse’s care need more systematic training in this field to understand the content and to understand their expanded role in this area. An interesting finding the authors reported was that the number of publications with the combined focus of nursing and genomics increased 1800% over a 20-year period (Giarelli & Reiff, 2012), illustrating the exponential overall increasing importance of genetics to health care and to nursing.

Lea et al. (2011) called for innovative teaching/learning processes to be implemented in nursing programs in order to prepare nurses at all levels in all settings to practice competently in genetics and genomics. The authors cited examples of how emerging technologies and new medical discoveries have always been included in nursing curricula over time. The authors put forth that it is important for nursing education regarding genetics and genomics go beyond basic science and new technologies. They called for nurse educators to include educational concepts that addressed the genetic impact on healthcare emphasizing the role of nursing in addressing individual and family concerns about and responses to genetic and genomic information.

In an integrative review, Wright et al. (2018) discovered there has been little progress, if any, toward nurses developing genomic competencies that are needed at the bedside. The authors cited few practicing nurses reported learning any formal education about genetics and genomics either before graduation or since graduation. The authors also reported that the review demonstrated there was a clear gap in education needed for the expanded role nurses are to have in helping patients and families with genomic conditions. Nurses reported learning about genetics in basic science courses; few, if any, had courses focused on role of nurses in genomic healthcare.

Arguments against Support of a Stand-Alone Genetics Course

Much of the opposition to a stand-alone genetics course in the nursing curriculum is centered on the overwhelming content saturation that has already been identified by faculty to limit effective use of innovative teaching/learning strategies. Giddens and Brady (2007) have reported that increasing content in pharmacology, pathophysiology, and medical diseases and treatments is overwhelming to nursing students and faculty alike. The authors encourage the use of integrated concepts as the best strategy to address content saturation.

Sharoff (2015) presented strategies for implementing either a stand-alone course or integrating genetics content throughout other nursing courses. The author reported that isolated courses that emphasize scientific content might leave out the important role of nursing in genetic healthcare. Students might not want to take the course because of their focus on preparing for the licensure exam with other clinical courses. Sharoff advised that mapping genetic content across the curriculum would help to maintain the emphasis on the importance of this content across the life span and across specialty and medical-surgical courses. She believed that this type of course would be more practical approach for most programs without available credit hours for an additional course.

Daack-Hirsch et al. (2013) provided five case studies of nursing programs that had successfully integrated genetics education throughout their existing courses in the nursing curriculum. The authors strongly advocated for this approach because they posited that it is the most expedient way to provide this critical content for undergraduate nursing students. The authors believed that nursing programs could adapt their own curricula using the strategies and resources of these five programs. Daack-Hirsch et al. also believed it would be nurses who would be most important to care for individuals and families with genetic disorders through assessment, caring, teaching, and support.

Reflection on Personal View of the Genetics Course Issue

After completing the readings on the pro and con arguments, I conclude that my own personal beliefs are in line with those that support a stand-alone genetics course. All authors recognized the exponential increase in genetic and genomic discoveries influencing healthcare in all settings for all persons. All recognized that nurses must be prepared to play a vital role in helping patients and families understand and manage the information that will be thrust upon them when faced with a genetic diagnosis or identified increased risk for a genetic condition. The arguments against a stand-alone course seem to be about process issues and concern over credit hours and faculty resources.

I believe that integration of content throughout the curriculum will result in diminished emphasis on the importance of genetics. Faculty will resort to covering basic and essential NCLEX-emphasized content without ensuring time for case studies and discussion of the effect of certain issues on families facing genetic diseases. Lea et al. (2011) argued that nursing programs have always adapted their curricula to meet the changing scope of medical discoveries as they have occurred over time. I agree this is one such time with almost daily breakthroughs in genetic and genomic diagnoses and treatments. Nurses must be educated early and adequately in order to incorporate the essential competencies into their practice. Integration of content may result in a lack of adequate education. A stand-alone genetics course offers the best approach to preparing undergraduate nursing students to practice competently in this genomic era of healthcare.

Summary and Relevance for Nursing Practice

Advances in health care everyday are being discovered in genetics and genomics. Along with these advances, there are serious issues that also arise, such as costs, privacy and confidentiality of information, and the emotional and psychological care needed for persons and families faced with genetic diagnoses. Daack-Hirsch et al. (2013) continue to support integration of genetics into nursing curriculum as the only way to control the explosion of content that is already difficulty to cover. On the other hand, Lea et al. (2011) firmly asset that there must be emphasis placed on educating nurses in genetics and genomics as they will be the practitioners who will be practicing at the bedside in various settings and will be likely to encounter the largest number of people facing conditions with a genetic basis. The views on a stand-alone genetics course or an integrated approach to genetics in nursing curriculum are very diverse and are not likely to change unless there is ongoing support from professional organizations to first educate faculty.

My first recommendation for practicing nurses would be to familiarize them with the nursing responsibilities put forth in the Essentials document developed by the Consensus Panel (2009). Nurses need to be aware of their roles in assessment, identification and referral, and the education, care, and support of persons and families with genetic conditions. My second recommendation would be to present a list of genetic conditions across various settings that have had serious discoveries or issues arise. Once nurses become more aware of how genetics and genomics are not only seen in maternity or pediatric cases, they will be more likely to value the importance of this growing area for demonstrating competency in nursing practice.

F-ELSI Pro/Con Argument Paper
1. Introduction and Choosing a Topic
Students select a topic from the approved list of financial, ethical, legal, and social issues
related to genetics and genomics. Submitting a paper on a topic that has not been
approved by faculty will result in a grade of zero. Students should clearly write a
sentence that identifies the topic and offers several sentences introducing the issue and
what the reader can expect in the paper.
2. Pro and Con sides of the Issue
Students should write at least 3 paragraphs detailing the pro side and an additional 3
paragraphs detailing the con side of the issues. This information needs to be referenced to
scholarly articles that offer support for the arguments presented. This section should be
written in an objective, balanced manner, without personal opinion interjected into the
discussion.
3. Personal Views Reflection
Students should clearly state which side of the argument they believe their own beliefs
are most in line to support. They should offer an explanation as to which information
presented in the previous section was most influential in influencing their opinion. Did
their perception of the topic change?
4. Summary and Relevance for Nursing Practice
Summarize the main points for the pro and con sides of the ethical issue. Offer two specific
nursing recommendations for nurses to consider when faced with the particular genetic
ethical issue when interacting with patients and their families.
5. References
Students need to provide references for any and all information that is taken from a source.
Sources should be current (within last 5 years) and they should be scholarly.
6. Writing style
Students need to write in a logical, clear, concise manner, avoiding generalizations. There
should be proper adherence to the parts of the paper, including the introduction, body, and
summary. Effective transitional phrases should be used for paragraph structure.
7. Grammar, Format, Style
Please proofread your paper for wording such as spelling, sentence structure, and
grammatical errors. APA (7th ed.) should be followed throughout the paper. Deductions
will be taken for errors/deficiencies in these areas.
7. The paper length should be 6 to 8 pages, including the title page and reference page ElSI Pro/Con Paper On Genetic Testing For Disease without Cures On Pediatric Patients Research Paper.

References

Consensus Panel on Genetic/Genomic Nursing Competencies. (2009). Essentials of genetic and genomic nursing: Competencies, curricula guidelines, and outcome indicators (2nd ed.). Silver Spring, MD: American Nurses Association.

Daack-Hirsch, S., Jackson, B., Belchez, C. A., Elder, B., Hurley, R., Kerr, P., & Nissen, M. K. (2013). Integrating genetics and genomics into nursing curricula: You can do it too! Nursing Clinics of North America, 48, 661-669.

Giarelli, E. & Reiff, M. (2012). Genomic literacy and competent practice: Call for research on genetics in nursing education. Nursing Clinics of North America, 47, 529-545.

Giddens, J., & Brady, D. P. (2007). Rescuing nursing education from content saturation: The case for a concept-based curriculum. Journal of Nursing Education, 46(2), 65-69.

Lea, D. H., Skirton, H., Read, C. Y., & Williams, J. K. (2011). Implications for educating the next generation of nurses on genetics and genomics in the 21st century. Journal of Nursing Scholarship, 43, 3–12.

Sharoff, L. (2015). Genetics and genomics integration into undergraduate nursing education. Journal of Nursing Education and Practice, 5 (4), 13-18.

Wright, H., Zhao, L., Birks, M., and Mills, J. (2018). Nurses’ competence in genetics: An integrative review. Nursing and Health Sciences, 20, 142-153 ElSI Pro/Con Paper On Genetic Testing For Disease without Cures On Pediatric Patients Research Paper.