The genetic testing assignment requires you to identify a number of ethical issues present and several stakeholders affected within the given scenario. The aim of the assignment is to learn about different genetic tests and how they might affect people, the regulatory and legal framework. In any given scenario, there are a number of ethical issues present, and several stakeholders affected within the scenario, each of whom will have their own viewpoints on the issue.
There are two reasons for doing this assignment:
- To learn about different genetic tests and how they might affect people, and the regulatory and legal framework
- To develop an appreciation of the effect of individual perspectives on the assessment of any single ethical issue.
Analyse the scenario and identify the stakeholders, the ways the stakeholders are affected, and possible effects or outcomes for each stakeholder. Discuss the ethical issues presented in the scenario, and then state your own position and judgement of the scenario in 1200 words.
Medical Ethics Framework
Write your Genetic Testing assignment with reference to the following:
1. Beneficence
A duty to do better than harm. (Benefits can be physical, psychological, economic, or social) Ask yourself: Will giving informed consent for this test cause better than harm?
2. Non-Maleficence
The duty not to cause harm (Harms can also be physical, psychological, economic, or social) Ask yourself: Will informed consent for this test cause harm to anyone?
3. Individual Rights
Respect for an individual’s right to be their own person and choose their own source of action. This involves privacy, informed consent and confidentiality (genetic information is sensitive, and access should be limited to those authorised to receive it).
Ask yourself: Will informed consent for this test compromise the anyones’ autonomy or rights?
4. Justice and Equity
Fair, equitable and appropriate treatment for all. The interests of all in the community are considered and potential discrimination is prevented.
Ask yourself: Will informed consent for this test compromise justice (fairness) or equity for anyone?
These four principles can provide a guide as to what is ethically important and a conceptual framework for discussing ethical issues. They do NOT provide hard and fast rules to operate by.
What is the ethical question? What are the relevant facts?
Who or what will be affected by the outcome? What are the relevant ethical considerations?
The discussion of scientific and ethical issues MUST refer to all four of the medical ethics listed above.
Scenario:
In the Australian State of Victoria, parents must give informed consent for their newborn baby to have a sample of blood taken through a heel-prick, and for that sample to be analysed for a number of congenital disorders including phenylketonuria (PKU). The Victorian State government pays for the test, meaning that there is no financial burden to the parents.
Imagine you are living in Victoria, a parent of a newborn baby, and therefore considering whether to consent to your baby having the test or not. Identify the stakeholders affected by your decision, address the four components of the ethical framework (beneficence, maleficence, autonomy, justice), then explain your decision in the final part of the assignment.
Specifically focus on PKU for this assignment, not the other disorders. The content of this assignment should cover
- Background information about the genetic condition
- Identify the stakeholders and briefly explain the way they are affected by the couple consenting to the test
- Discuss the four aspects of the Medical Ethics Framework and how they apply to this genetic testing scenario.
- List the benefits (beneficence), harms (maleficence), compromises to personal rights (autonomy) and any impact on justice and equity that are likely to arise if you have the test.
- Explain your decision in the final part of the assignment. State your own position. Will you agree and give informed consent for your baby to have the test, or not? Give reasons for your decision.
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