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Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper

Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper

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 Testing For Disease Without Cures On Pediatric Patients Essay Paper. 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.

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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 Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper.

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)Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper. 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)Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper. 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)Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper. The act strongly prohibits health insurance and employers from using genetic results in discriminating against patients and their children for health cover.

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 Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper.

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)Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper. 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 Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper.

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.

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 Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper.
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.

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? Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper
  7. 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.

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  1. 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.
  2. 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.
  3. Grammar, Format, Style
    Please proofread your paper for wording such as spelling, sentence structure, and grammatical errors. APA (7th) should be followed throughout the paper. Deductions will be taken for errors/deficiencies in these areas.
  4. The paper length should be 6 to 8 pages, including the title page and reference page. Genetic Testing For Disease Without Cures On Pediatric Patients Essay Paper