Lecture 20- The Ethical Dimension of Medical Genetics Flashcards
Damage the info of genetic testing can do
- Cause people to take their lives
- Damage the rest of their lives
How genetic testing can help
The family found a gene that put them at serious risk for colon cancer
43/100 family members with gene
Genetic Information …
- is personal, but may also affect other family members
- maybe be predictive of future adverse health events (not always interventions available)
- people can make choices with it that affect future generations
- 3rd parties becoming more interested…police, immigration etc
ISSUES of genetic testing for medial professionals to consider
- Determining what genetic services should be offered to home and when
- fufilling responsibilities to both patients and their families
- Communicating about the results
Ethics of genetic testing to think about..
Autonomy : Right to know AND NOT TO KNOW genetic info
Responsibilities to patients an their families (max benefit and minimise harm)
Fairness and allocation of resources
Determining what genetic services should be offered to home and when
Testing AT RISK individuals
- how far do you go to identify if they’re at risk?
- When should tests be offered prior to conception
- when should children be tested? What condition?
Equitabe/fair access to services
- prioritising limited resources
- assessing families with specific conditions
Testing at risk children… when and why should they be tested.
Test for
- early-onset
- adult-onset
- serious adult-onset where no treatment is available (huntingtons)
Children NOT to be gene tested for adult-onset conditions if nothing can be done to treat/halt disease onset.
This is for ‘respect of future autonomy’ and non-maleficence as the knowledge of the future conditions could have adverse mental effects to the patient
If you have a family member who wants to know if they have a disease, but another member (eg twin or parent) DON’T want to know
Try to manage situation in a way that you can give that individual info without it being obvious to the other family member (NOT ALWAYS POSSIBLE)
what are our obligations??
Susan has BRCA gene. She has two sisters and two daughters. She doesn’t want her family to know she’d be tested, even though this could put the family member at risk.
Does the GP/ counselling team have an obligation to inform the family about this gene?…
Even though the family members could potentially be at a high risk, so late-diagnosis could be prevented.
However Susan’s information is her own, and as her doctor we have no right to disclose her info without her consent. However it is how you disclose the information without giving away Susan’s information to family members.
-although the family members have a right to know about genetic conditions that may affect them. How do you advise them about their risk without violating their right NOT to know??
Communicating about result of genetic testing
- Voluntary vs mandatory counselling
- directive vs non-directive counselling
- Full disclosure vs selective
- confidentialilty vs duty to inform relatives at genetic risk
- privacy of genetic information and interests of third parties
- understanding of genetic test results discrimination, stigmatisation
Findings with implication for family relationships
Genetic screening for a specific condition may involve screening multiple family members
Potential findings include:
-Misaligned Paternity
- Adoption
- Incest
How do you manage these findings? What ethical issues may arise?
Third parties… who may be interested?
Genetic test results need to be enclosed to employers (risk of work being affected), insurance(cost/risk), police(to identify you) etc BUT they cannot require you get testing
Genetic Determinism
Idea that genes are all that count, and your fate is sealed by your genes. Genes have role to play BUT genetic info is so complex, so much we DON’t know. Only part of the story.
Genetic Discrimination
- By insurers, may be refused coverage, or offered coverage at higher costs.
- Discrimination may prevent people from being tested
Genetic Stigmatisation
-social consequences, worse for particular conditions
