Can Predictive Genetic Testing Threaten Patient Autonomy? Case Scenario Ashley is a 34-year-old w. Question
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Can Predictive Genetic Testing Threaten Patient Autonomy?
Case Scenario
Ashley is a 34-year-old woman who is a patient in the family care clinic. Her sister just gave birth to a child who was born with fragile X syndrome (a genetic mutation associated with intellectual disabilities and impaired social development). Although her first child, a daughter, has not demonstrated any signs of this disorder, Ashley is requesting to have predictive genetic testing (PGT) on her 5-year-old daughter to determine if she is a carrier of fragile X syndrome.
Discussion
The Human Genome Project initiative has spearheaded the development of technology that can identify conditions with genetic origins in patients who have no demonstrable symptoms but may carry a mutated gene. Although not evidencing the disorder, future offspring of a patient who carries the mutation may have the disorder. PGT may be done to identify patients who may be carriers for inherited genetic disorders such as fragile X syndrome.
One of the legal and ethical concerns raised by health care providers regarding pediatric genetic screening addresses the value of testing for disorders that cannot be cured or ameliorated. In this particular case, the data obtained from this screening will not be used to medically benefit the health of Ashley’s daughter. The American College of Medical Genetics contends that ultimately, the best interest of the person tested must be the focus of PGT. Arguably, Ashley’s daughter will have the right to give informed consent to this procedure as an adult, should she choose to do so.
Answer the following:
Describe the ethical principles that are in conflict in this case? Which principle do you believe should have preeminence in deciding whether or not parents have the right to have PGT in a child who will not medically benefit from the findings?
Do the benefits outweigh the risks of PGT in the child? Identify the stakeholders who could benefit from the findings of PGT.
SCIENCE
HEALTH SCIENCE
NURSING
NU 470
Can Predictive Genetic Testing Threaten Patient Autonomy? Case Scenario Ashley is a 34-year-old w