genetic disorder

Answer the following. Please read instructions

Financial Issue – 5 points

Genetic testing is becoming increasingly popular at all stages of the lifespan, beginning with pre-implantation genetic testing, and continuing through prenatal testing, newborn screening, carrier testing, predictive testing for those with a family history of genetic disorders, and diagnostic testing for symptomatic individuals. Pick one health disorder for which genetic testing is available and find a reputable source regarding the cost of accessing this technology. You will use this article to write four sentences as follows, taking care to include citations in any format for the chosen article and any other reputable sources you were asked to use.:

1. What genetic disorder did you pick? (1 sentence) 
2. How much does genetic testing for this disorder cost (with reputable source)?  (1 sentence) 

3. What groups may be unable to access these technologies and why? (1 sentence) 

4. How does the concept of distributed justice relate? (1 sentence) 

Stakeholders – 4 points

For the disorder you picked in the previous question, identify at least four stakeholders that would be involved in genetic testing and, as relevant subsequent decisions making (e.g. decisions surrounding family planning or termination of pregnancy). Provide a description of each stakeholder and what is at stake.

Possible stakeholders include: the patient, the patient’s family, an unborn fetus, the doctor, the nurse, community groups, grandparents, disability advocates, insurers, etc.  You’re encouraged to think outside the box!

Possible terms for what is at stake include: autonomy, a duty to not harm,  a sense of what is the beneficent thing to do, distributive justice, etc. Again, you’re encouraged to think outside the box!

Number each stakeholder (1, 2, 3, 4) and use full-sentences to concisely provide your answer. Incorporate at least 1 ethical term per stakeholder (bold and underline the term) as it relates to the specific stakeholder and scenario.

Ethical Issues 1 – 4 points

1. What is the role of the nurse in ensuring informed consent for a procedure or test pertaining to the patient’s genetics? What types of help would the nurse provide and what types of questions should the nurse ask to ensure the patient is truly informed? (2+ sentences) 

2. How would you respond if the patient’s decision to undergo (or forego) treatment was different from your own? What would your interaction with that patient look like? Who would you talk to for help? (3+ sentences)

Ethical Issues 2 – 5 points

A woman who recently gave birth was accidentally informed of her father’s diagnosis with Huntington’s disease after he murdered her mother. The woman is upset that the doctor did not warn her, citing that she would have terminated the pregnancy if she knew she and the baby were at risk.

Use this case to:

1. Discuss autonomy/privacy versus duty to warn as it pertains to the woman’s case (1+ sentence)

2. Discuss your role as a nurse in this situation (1+ sentence)

Legal Issues – 5 points

Your patient confides in you that she has just been found to carry the Huntington mutation and is concerned because she is about to go on a second job interview for a position that she really likes.Give your patient advice based on your understanding of the Genetic Information Nondiscrimination Act; a complete answer will address each of the following subquestions::

1. Can her prospective employer ask about her health history and genetic test results? (1 sentence)

2. If the employer did ask and then did not hire her, is this lawful and what could she do? (2+ sentences)

3. Should she tell her employer about her genetic test results?(1 sentence)

4. If she were to tell her employer about her genetic test results, and the employer did not hire her, is this lawful and what could she do? (2 sentences)

5. What types of insurance can discriminate against her based on her genetic test results? (1 sentence)

Additional Legal Issues – 4 points

1. What is an additional laws* that are applicable to your patient’s situation? What additional legal issues your patient may encounter?  (2+ sentences)

*e.g. HIPAA, ADA, or any relevant law, whether it be an active law, a hypothetical law, a proposed law that was not ratified, or a pending piece of legislation.

2. What is your role as a nurse in conveying this information to the patient and their potential employer or insurance provider? (1+ sentences)

If you used any sources to answer this question, cite the source using any citation format.

Social Issues – 3 points

Some genetic disorders result in a physical appearance, symptoms, behaviors, or other phenotypic presentations that are stigmatized by society. Some examples include Down Syndrome, Achondroplasia, Huntington’s, Harlequins Ichthyosis, and many more (use your imagination and google)! Choose one disorder with a genetic basis and write 3 sentences about:

1. What types of stigma might a person with this disorder face? (1+ sentences)

2. What is the role of the nurse in helping a patient with this disorder in coping with the stigma? (2+ sentences)

3. Recommend one support group that the patient may benefit from and be sure to include a link to their website. (1+ sentences)