Genetic controversies Flashcards
Ethical scenarios involved with genetic testing
Predictive genetic testing
Cancer gene testing
Prenatal testing
What is predictive genetic testing?
A patient may come in to the clinic who has a FH of a genetic condition. They may want to find out more about it, the risks/consequences and may or may not want to be tested to see if they have it.
What must a doctor find out / discuss about the patient before undergoing gene testing?
Their reasons for taking the test
Implications of the result being positive or negative - are they ready for it?
Insurances/mortgages - many don’t allow you to take one out if you have a genetic condition
Potential impact of testing on self, family or work (Support network? Children at 50% risk! They may lose driver’s licence so will that impact work?)
What happens if say a person that has decided against predictive testing has children and one of those children (>16) attends the Genetics clinic and requests genetic testing? What is the ethical dilemma and how would you go about this?
If the daughter got tested and it was +ve then that would give her father his result which he did not want. You want to try and respect both of their decisions and do no harm.
You would ask them both and see if they would be willing to come into the clinic together to discuss it. You would again explore her knowledge about risks and FH and her reasons for testing. But at the end of the day you must respect her autonomy too and if she still wants to be tested then you cannot stop that.
What is a prenatal diagnosis?
During a pregnancy a women will get a 12 week scan to check on the baby. Sometimes an anomaly can be detected at this stage and further diagnostic testing can be carried out in order to find out what the abnormality is
What are the further diagnostic tests used to reach a prenatal diagnosis? (2)
Amniocentesis
Chorionic villus sampling
What ethical dilemmas arrive with a prenatal diagnosis?
The doctor owes it to be professional and be honest with the facts whilst withholding any judgement or personal opinions.
Must respect the parents wishes/autonomy - trust that they know what is right for them at this point in their lives
Support the couple in their decision
However, if the parents find out that the pregnancy has an abnormality they might consider terminating it (»>do no harm)
Amniocentesis and chorionic villus sampling - carry 1% risk of miscarriage
Is this playing god? Is getting rid of a baby because it is disabled right? But could the parents cope with a disabled child?
What if a 20 y/o daughter of a BRCA1 carrier seeks a predictive gene test? What issues must the doctor consider?
- Screening for breast cancer wouldn’t usually start until 30 years. If she was +ve and she hadn’t been tested she could live with a +ve result for 10 years.
- Also, risk reducing surgery is unlikely to be an option for a 20 year old. Would it be damaging to her mental health finding out so early on?
- Life insurance/mortgages would ask about FH and if they find out she was positive it would be detrimental
What if the parents know that their child who is of child bearing age themselves has a genetic condition but want to protect them from difficult news?
The doctor should explain the ethical theory of ‘do no harm’ for their children. It is understandable that they want to protect them from the condition, however, it may be that it can be treated or avoided in future generations either by IVF or pregentic diagnosis
Communication and explanation is key.
