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

Some other cases

1. MEN type 2A

2. HBOC

3. DMD (Duchenne)

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

Informing relatives (cont.)

2. The HBOC case

- con: ?

- pro: ?

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?

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?