Comprehensive Case Summary-Ethical  social and Legal Needs of Patients with Positive Genetic Test results

Comprehensive Case Summary-Ethical  social and Legal Needs of Patients with Positive Genetic Test results

Hello, and welcome to this presentation. This presentation will highlight the ethical, social, and legal needs of patients with positive genetic test results and explore the role of nurses in the comprehensive management of these patients.

Introduction

Genetic disorders are a spectrum of disorders caused by gene mutations. Sickle cell anemia, cystic fibrosis, Down syndrome, and Huntington’s disease are some of the most commonly encountered genetic disorders (Angular et al., 2020). This presentation focuses on the comprehensive management of cystic fibrosis. The presenting patient case is a 45-year-old male with complaints of fatigue and cough. Assessment findings revealed a history of multiple pneumonic presentations that sometimes prompted hospitalization. Physical examination revealed digital clubbing. The family history of the patient was positive for cystic fibrosis. His father died of pneumonia attributed to pseudomonas colonization secondary to cystic fibrosis. The cystic fibrosis genetic panel test revealed the presence of mutations in the CFTR gene. The patient was diagnosed with cystic fibrosis.

Ethical Considerations

Comprehensive management of cystic fibrosis and other genetic disorders may sometimes present significant ethical issues. Genetic counselling, an essential care parameter in genetic disorders, may raise ethical concerns related to privacy protection and confidentiality. Clarke & Wallgren-Pettersson (2019) note that the overarching principle behind maintaining the confidentiality of an individual’s information, their risk of developing genetic disorders, carrier status, and family history is their vulnerability to social discrimination and stigma. It is thus important that a patient’s genetic information be kept confidential. The caregiver’s obligation to the ethical principle of confidentiality and their duty to protect the health of other involved family members often raises ethical dilemmas. This is because, in most cases, when a patient receives their genetic testing results, they are party to information that may directly influence the health of other family members. In such instances, caregivers are responsible for acting in the best interest of the patient and the patient’s family.

Ethical Theories

Confidentiality is a professional morality value governing medical decision-making processes. The ethical principle of confidentiality is supported by the theoretical postulations of utilitarianism. The Utilitarian theoretical approach distinguishes wrong and right by analyzing the outcomes (Vearrier & Henderson, 2021). The utilitarian justification of confidentiality is that this ethical choice produces the greatest good for the caregiver as well as the patient. Per the caregivers’ perspective, confidentiality is a demonstration of their intrinsic ability to respect their patient’s autonomy with a corresponding reward of pleasure, happiness, and self-worth. Patients also develop satisfaction with the care process as they feel respected and valued.

Related Legal and Public Policy

Confidentiality decisions are strongly embedded in the considerations of public policies and have legal precedents. The legal and quasi-legal standards on which confidentiality and disclosure of information are rooted are the codes of nursing practice and the privacy protection laws. Per the codes of medical practice, nurses and other caregivers have legal obligations to maintain the confidentiality of protected health information. The legal precedents of confidentiality are manifested by the Health Insurance Portability and Accountability Act (HIPAA) of the United States. Per HIPAA, patients maintain autonomy over their health information. Caregivers. are prohibited from disclosing this information without the consent of the patients. Notably, breaches in the legal and quasi-legal provisions often have legal consequences.

Interprofessional Care

Comprehensive management of cystic fibrosis and other genetic disorders utilizes the multidisciplinary team approach. The multidisciplinary teams involved include nurses, physicians, genetic counsellors, medical geneticists, pharmacists, and social workers. Nurses play a role in providing nursing care to the invited patients. The inclusion of physicians and pharmacists in this care approach is a result of the understanding that these disorders often have somatic presentations and physiologic deficits that require medical care. Physicians thus have a role in diagnosing and treating these disorders, while pharmacists provide medication information relevant to treating these disorders. Genetic counsellors and medical geneticists play a role in identifying individuals at risk of these disorders and educating the patient on genetic testing and other diagnostic tests available for confirming these disorders (Gupta & Endrakanti, 2023).

Referral Resources

Several referral resources are available for patients with positive genetic test results and those with relatives with genetic disorders. Genetic support groups are valuable community resources targeted at addressing the psychosocial concerns of these disorders. These groups help patients cope with the new reality and emotional concerns that may proceed with their diagnoses. Examples include the National Down Syndrome Congress, Genetic Alliance, and others. Additionally, web resources such as Genetic Alliance, March of Dimes, and the National Organization for Rare Disorders are also valuable in supporting patients with genetic disorders. Furthermore, medical geneticists and genetic counsellors play a role in providing genetic information to patients. In this regard, their role is to utilize the available patient health information to ascertain their likelihood of developing genetic disorders, informing individuals of their carrier status and medical information on various genetic disorders. They also educate individuals on genetic test results and their interpretations (Middleton et al., 2022).

Plan of Care

A comprehensive care plan for cystic fibrosis focuses on optimizing functions and avoiding acute events. This can be attained by ensuring aggressive control of respiratory infections through pharmacotherapy, ensuring airway clearance, and optimizing nutrition to enhance the body’s ability to fight infections. Pharmacotherapy with antibiotics is necessary to eradicate bacterial colonization. Mucolytics, anti-inflammatory medications, and supportive therapy such as hypertonic saline effectively ensure airway clearance and relieve obstruction. CFTR modulators such as Ivacaftor can also be used to correct the dysfunction attributed to the disease. Holistic care incorporating counselling and other psychotherapies is also valuable in addressing the emotional concerns of these patients (Eschenhagen & Schwarz, 2019).

Genetic Nursing Care Strategies

Nurses play a role in the comprehensive management of cystic fibrosis. Genetic nursing care strategies include optimizing respiratory functions, optimizing nutrition, and prevention of acute events Odobasic Palkovic et al., 2020). Nursing care plans essential in attaining these strategies include the administration of medications, monitoring patients’ breathing patterns to identify exacerbations, infection prevention by maintaining clean environments and educating patients on the principles of infection prevention and control, and promoting optimal nutrition by educating patients on healthy diet options. Nurses can also play a role in promoting effective coping for the patient and his family members.

ORDER A PLAGIARISM-FREE PAPER HERE

We’ll write everything from scratch

---

Assignment Content

Competency
Identify ethical dilemmas encountered in professional nursing practice.
Describe the ethical theories and principles influencing healthcare decisions.
Explain the interdependency of genetics, genomics, and ethics in nursing care.
Describe the principles of genetics and genomics.
Differentiate the legal and professional policies influencing healthcare decisions.
Design nursing care strategies that incorporate genetic and genomic risk factors.

Student Success Criteria
View the grading rubric for this deliverable by selecting the “This item is graded with a rubric” link, which is located in the Details & Information pane.

Scenario
As a case manager at your healthcare organization, you were asked to present at the annual case conference highlighting genetic and genomic nursing care strategies. The virtual presentation will highlight the ethical, legal, and social needs of a client with a positive genetic test result and explore the role of general nursing when caring for clients with genetic and genomic needs.

Instructions
Select a genetic or genomic condition for the virtual presentation.

The presentation must include Microsoft PowerPoint® slides with notes, images and an audio recording of the presentation.

Include the following information in the recorded presentation regarding the selected genetic or genomic condition:

Describe a case scenario that explains the client’s genetic or genomic condition, including client and family history, specific genetic assessment findings, and diagnostic results.
Identify ethical considerations, including a potential ethical dilemma based on the case scenario
Explain ethical theories and principles related to the ethical dilemma in the case scenario
Analyze relevant legal and professional policies related to the genetic or genomic condition
Describe interprofessional care professionals and referral resources for the facilitation of genetic and genomic care
Develop a plan of care, including genetic nursing care strategies relevant to the client’s genetic or genomic condition
All content must be supported by providing rationales, examples, and evidence from credible sources
The recorded presentation must be between 8-10 minutes

Assessment Requirements/Submission Requirement:
Recorded presentation
PowerPoint with speaker notes