Studium Generale Lecture Series April/May 2011 Ethical dilemmas in health care

1. Studium Generale Lecture Series April/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

2. Ethical dilemmas • Predictive testing of adults and children (12/4, GdW) • Abortion revisited (19/4, WD) • Prenatal diagnosis and embryo selection (26/4, GdW) • Bodily integrity in reconstruct. medicine ((10/5, JS) • Genetic screening and DTC tests (17/5, WD) • Euthanasia and assisted suicide (24/5, RB)

3. 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

4. 2 cases: Huntington disease and hereditary breast and ovarian cancer • 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

5. Presymptomatic testing for HD: yes or no? No: firstly, do no harm Yes: • respect for autonomy • the subjectivity of harm • relevant empirical findings

6. Protocol: presymptomatic testing for HD and HBOC • Inclusion-/exclusion criteria • Preparing for the test • Informing about the test results • Post-test counseling

7. I. Inclusion criteria • Voluntariness: implication of respect for autonomy/self-determination • Competence: a necessary condition of autonomy • Majority?

8. 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

9. 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

10. 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?

11. Some other cases 1. MEN type 2A 2. HBOC 3. DMD (Duchenne)

12. II. Preparation for the test1. Pretest counseling- aims- necessity- pros and cons of group sessions

13. II. Preparation (cont.) 2. Informed consent Information • medical • non-medical Consent: voluntariness

14. 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

15. 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

16. Informing relatives: some cases • The Huntington case: • pro: reproductive interests • con: • fatal information • empiricial evidence?

17. Informing relatives (cont.) • The HBOC case • con: ? • pro: ?

18. IV. Post-test counseling Points to consider: • understanding and integrating the test result • choosing between (reproductive and other) options • participating in scientific research

19. 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?

20. Low risk … low benefits? 1. No categoral distinction: - maybe key genes > predictive value - combination tests 2. Benefits? - motivation to healthy lifestyle? - false reassurance: contraproductive consequences?