Describe the nurse’s role as patient educator related to genetic disorders
Module Focus

1. Describe the nurse’s role as patient educator related to genetic disorders.

2. Demonstrate cultural awareness when providing education to patients and families.

3. Differentiate among various types of genetic testing.

4. Anticipate ethical concerns related to possible diagnosis with a genetic disorder.

Learning Activities

2. Review “A Journey into Human DNA” by visiting the following website http://www.pbs.org/wgbh/nova/body/journey-into-human-dna.html

3. View the short video “Your Genetic Crystal Ball” by clicking on the link http://www.cbsnews.com/video/watch/?id=50136239n
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4. Read Pedigree and Family History Taking.

5. Read the article Genomic health care: Is the Future now?

6. Familiarize yourself with the Human Genome Project. Discuss implications for providing nursing care in light of this of this project.

7. Consider ethical and legal implications related to genetic testing.

8. Explore the following websites for information related to genetic disorders; differentiate between information targeted at patients and families from that targeted at health care professionals.

• http://www.nlm.nih.gov/medlineplus/geneticdisorders.html

• http://www.geneticseducation.nhs.uk/

• http://www.genome.gov/25019880

• http://www.genome.gov/10001204 (choose a topic from this list for the Genetic Presentation)

Choose a genetic disorder listed on the following website: http://www.genome.gov/page.cfm?pageID=10001204

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Create and post to the appropriate Forum using the disorder name as the title.

OUTLINE: Individual Submission may include but is not limited to the following:

A. Etiology & Pathophysiology: Include populations affected, risk factors, and other related factors (age, gender, etc.). Discuss method of transmission and gene(s) affected.

B. Physical Concerns: What physical characteristics may be apparent? Is an affected patient at risk for additional complications? Is mobility affected? Nutritional status? Etc.

C. Psychosocial & Family/Support Systems: Discuss psychosocial implications, including body image, socialization issues, and educational concerns. How might friends and family members of an affected person be impacted? Why? Is government assistance available? How would a patient access available resources?

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D. Genetic Testing: Is genetic testing available? When might it be indicated? Discuss cost/benefit ratio.

E. Legal/Ethical Considerations: What ethical implications might arise as a result of genetic testing; of opting in/out of testing? Who can consent to testing?

F. Cultural Considerations: Is the incidence of the disorder increased in certain cultural populations? Would members of various cultures be impacted differently based on underlying beliefs, practices, etc.?

G. Teaching Points: At what age is the disorder typically identified? What usually leads to diagnosis? What can the patient/family expect as the person ages and the disease progresses? What are current treatment options?

H. Scholarly Presentation: Spelling, grammar, visual interest of PowerPoint Presentation

I. APA format: Use of minimum of three current peer reviewed resources (not more than 5 years old), APA format throughout the PPT presentation

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