Ethics (TRANSFERRED) Flashcards
Reference: Genetics residents in-training examination - March 2020 (Spring 2020)
A physician from your province’s Child Protection Services has referred a family to your clinic for your guidance.
A 6-year-old boy has been recently placed in the care of his maternal aunt. His 44-year-old mother developed significant neurological and psychiatric symptoms over the past few years, and took her own life during an episode of severe depression. During this tumultuous time, she was diagnosed with CADASIL. The boy’s father is unknown, and his maternal grandparents died in a car accident in their 30s many years ago. This 31-year-old maternal aunt is the only surviving relative, and is trying to decide whether she should legally adopt the child or propose an outside adoption. She comes to you with two specific requests.
Please list a few key clinical considerations and ethical/legal considerations to consider in your counselling session for the following requests:
- The maternal aunt would like to be tested for CADASIL.
- The maternal aunt would like her nephew to be tested, to know if he will develop the disease, and wonders what will happen to his genetic family history information if he is adopted by someone else.
- Does she have any clinical symptoms ? Migraine with aura; TIA/stroke; cognitive changes; mood disorder; et al.
- How was the diagnosis made in her sister? Was there a molecular confirmation?
- What provisions does your province have about access to medical records and access to genetic test results on a deceased adult?
- Is there genetic material (biopsy/autopsy tissues?) for available testing?
- Is the aunt aware of the implications of predictive genetic testing?
- Other reasonable answers accepted.
2.
- CPS guideline on testing minors, explicitly against so in the context of adoption.
- The adoptive parents (whoever they will be) will need to be informed of this family history and of potential for testing when he is eligible (14 in Quebec).
- More answers possible, based on your provincial statutes!
« Infants and children being considered for adoption should not be subjected to genetic testing where there is no timely medical benefit. » POSITION STATEMENT : Guidelines for genetic testing of healthy children
A joint statement with the Canadian College of Medical Geneticists
L Arbour; Canadian Paediatric Society, Bioethics Committee. Paediatr Child Health 2003;8(1):42-5 . Reaffirmed: Jan 30 2017
