Date post: | 30-Dec-2015 |
Category: |
Documents |
Upload: | talon-carpenter |
View: | 28 times |
Download: | 0 times |
Universiteit Maastricht
Studium Generale Lecture SeriesApril/May 2011
Ethical dilemmas in health care
dr. Ron Berghmans, dr. Wybo Dondorp,dr. Jenny Slatman, prof.dr. Guido de Wert
FHML/Dept. Health, Ethics & Society
Universiteit Maastricht
Ethical dilemmas
1. Predictive testing of adults and children (12/4, GdW)
2. Abortion revisited (19/4, WD)
3. Prenatal diagnosis and embryo selection (26/4, GdW)
4. Bodily integrity in reconstruct. medicine ((10/5, JS)
5. Genetic screening and DTC tests (17/5, WD)
6. Euthanasia and assisted suicide (24/5, RB)
Universiteit Maastricht
Predictive genetic testing:what are we talking about?
Individual testing vs population screening
Postnatal vd prenatal testing
Minors/children vs adults
Presymptomatic vs susceptibility testing
Universiteit Maastricht
2 cases: Huntington disease and hereditary breast and ovarian cancer
1. HD: autosomal dominant, complete penetrance, mostly of midlife-onset, lethal
2. HBOC: autosomal dominant, incomplete penetrance, onset from early adulthood onwards, preventive and therapeutic options
Universiteit Maastricht
Presymptomatic testing for HD: yes or no?
No: firstly, do no harm
Yes:- respect for autonomy- the subjectivity of harm- relevant empirical findings
Universiteit Maastricht
Protocol: presymptomatic testing for HD and HBOC
1. Inclusion-/exclusion criteria
2. Preparing for the test
3. Informing about the test results
4. Post-test counseling
Universiteit Maastricht
I. Inclusion criteria
1. Voluntariness: implication of respect for autonomy/self-determination
2. Competence: a necessary condition of autonomy
3. Majority?
Universiteit Maastricht
Minors: 3 age categories
• - 12 y: incompetent, parents decide;
• 12-16 y: if competent: shared decision making; double consent;
• > 16 y: competent (in principle): independent decision making authority
Universiteit Maastricht
PGT in incompetent children
Strong consensus:
1. The best interests of the child are of paramount importance
2. Postponement of testing in order to respect the child’s right not to know
3. The strongest justification: the health interests of the child
Universiteit Maastricht
Presymptomatic testing on the request of the parents: the HD case
Against testing:- the child’s right not to know- a high risk of serious harm
For testing: ‘empiricism’- no evidence of harms of testing- possible harms of not-testing
What do you think – and why?
Universiteit Maastricht
II. Preparation for the test
1. Pretest counseling- aims- necessity- pros and cons of group sessions
Universiteit Maastricht
II. Preparation (cont.)
2. Informed consent
Information- medical- non-medical
Consent: voluntariness
Universiteit Maastricht
III. Informing about the test results: what about the relatives?
Medical secrecy/the right to confidentiality
3 views:- secrecy is absolute- the patient is the family: relatives ‘own’ the
information- keep the secret, except in case of a conflict of
duties
Universiteit Maastricht
Informing relatives (cont.)
Conditions:- various efforts to get consent have failed- the doctor feels he is in a conflict of duties- there is a high risk of serious harm for the
relatives (s)- informing the relative(s) will probably
prevent serious harm- no more information is provided than is
strictly necessary
Universiteit Maastricht
Informing relatives: some cases
1. The Huntington case:
- pro: reproductive interests
- con:- fatal information- empiricial evidence?
Universiteit Maastricht
IV. Post-test counseling
Points to consider:
1. understanding and integrating the test result
2. choosing between (reproductive and other) options
3. participating in scientific research
Universiteit Maastricht
Susceptibility testing
• Often: low predictive value
• Implications for ethical evaluation?
- low risk of discrimination?
- low risk of conflict of interests?
- low risk of psychosocial harm?