# Ethical Nursing Care in Genetics and Genomics

### Fact Sheet: Cystic Fibrosis

## Description of the Genetic Condition

### Genetic Contribution to the Disease
Cystic Fibrosis (CF) is caused by mutations in the **CFTR gene** located on chromosome 7. This gene is responsible for producing the cystic fibrosis transmembrane conductance regulator protein, which regulates the movement of salt and water in and out of cells.

### Inheritance Pattern
CF follows an **autosomal recessive inheritance pattern**, meaning that an individual must inherit two copies of the mutated gene (one from each parent) to express the disease.

### Signs and Symptoms
– **Respiratory Issues:** Chronic cough, frequent lung infections, wheezing, and difficulty breathing.
– **Digestive Problems:** Malabsorption of nutrients, pancreatic insufficiency, and gastrointestinal blockages.
– **Other Symptoms:** Salty sweat, clubbing of fingers and toes, and fertility issues in both genders.

## Ethical Issues Related to Cystic Fibrosis

– **Informed Consent:** Patients and families must be fully informed about genetic testing, including potential outcomes and implications for family members.
– **Discrimination:** There are concerns about genetic discrimination by employers or insurance companies based on genetic predisposition to CF.
– **Privacy:** Maintaining confidentiality of genetic information is crucial to protect patients from stigmatization and discrimination.

## Legal Issues Related to Cystic Fibrosis

– **Genetic Testing Legislation:** Laws such as the **Genetic Information Nondiscrimination Act (GINA)** protect individuals from discrimination based on genetic information in health insurance and employment.
– **Patient Rights:** Patients have the right to access their genetic information and make informed decisions regarding their health care.

## Scope of Nursing Practice Concerning Genetic and Genomic Considerations

1. **Assessment:** Nurses must assess family history and potential genetic risks in patients presenting with symptoms of CF.
2. **Education:** Provide education about CF, including disease management, genetic implications, and available resources.
3. **Support:** Offer emotional support and resources for families navigating genetic testing and CF management.
4. **Advocacy:** Advocate for patients’ rights and access to genetic counseling and testing services.

### Conclusion

Understanding the interplay between genetics, ethics, and nursing practice is essential in providing holistic care for individuals with genetic conditions like cystic fibrosis. By promoting informed decision-making and ethical practices, nurses play a crucial role in the care continuum for these patients.

### References

– Cystic Fibrosis Foundation. (2022). Understanding cystic fibrosis.
– National Human Genome Research Institute. (2023). Genetic testing and ethics.
– U.S. Department of Health & Human Services. (2023). Genetic Information Nondiscrimination Act (GINA).

*Note: This fact sheet is formatted for clarity and conciseness. Images and charts may be included to enhance understanding.*

 

 

Deliverable 3 – Ethical Nursing Care in Genetics and Genomics

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Assignment Content

1.

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Competency

Explain the interdependency of genetics, genomics, and ethics on nursing care.

 

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 the Chair of your organization’s Education Council, you plan to offer professional development for the nursing staff that focuses on the interdependence of genetics, genomics, and ethics. This professional development is in response to a survey conducted the previous month related to understanding nursing’s role when caring for individuals with a genetic or genomic condition. You decide to create a fact sheet for a genetic or genomic condition. The fact sheet will include a description of a genetic or genomic condition, ethical and legal issues associated with genetic or genomic conditions, and the scope of nursing practice related to genetic and genomic considerations.

 

Instructions

Include these components in the fact sheet:

· Description of the genetic or genomic condition, including:

· Genetic contribution to the disease

· Inheritance pattern

· Signs and symptoms

· Description of the ethical issues related to the genetic or genomic condition

· Description of the legal issues related to the genetic or genomic condition

· Explanation of the scope of nursing practice concerning genetic and genomic considerations

 

All content must be supported by rationales, examples and evidence from credible sources.

· The fact sheet should be no longer than two pages, and you may include images

 

Assessment Requirements/Submission Requirement:

Fact Sheet

 

Resources

For additional information on creating a fact sheet, please visit the Library and Learning Services Answers page:

· How do I write a fact sheet?

 

For additional writing and research support, please visit the following Library and Learning Services resources:

· APA Guide

· Nursing Research Page

· How do I know if a source is credible?

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