1. Universiteit Maastricht 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. 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)

3. 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

4. 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

5. 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

6. 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

7. Universiteit Maastricht I. Inclusion criteria 1.Voluntariness: implication of respect for autonomy/self-determination 2.Competence: a necessary condition of autonomy 3.Majority?

8. 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

9. 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

10. 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?

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

12. Universiteit Maastricht II. Preparation for the test 1. Pretest counseling - aims - necessity - pros and cons of group sessions

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

14. 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

15. 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

16. Universiteit Maastricht Informing relatives: some cases 1.The Huntington case: -pro: reproductive interests -con: -fatal information -empiricial evidence?

17. Universiteit Maastricht Informing relatives (cont.) 2.The HBOC case -con: ? -pro: ?

18. 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

19. 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?

20. Universiteit Maastricht 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?