Appendix 1
Background information about participants in the Delphi study
Country and total number per country (N) / Participation in Delphi round number / DisciplineNetherlands (7) / 1 & 2 / Patient Organisation
2 / Ethicist
2 / Ethicist
1 & 2 / Geneticist
1 & 2 / Geneticist
2 / Psychiatrist/Ethicist
1 / Ethicist
United Kingdom (4) / 1 & 2 / Ethicist
1 & 2 / Geneticist
1 & 2 / General Practitioner
1 / Psychiatrist
Belgium (2) / 1 & 2 / Ethicist
1 & 2 / General Practitioner
Sweden (1) / 1 & 2 / Physician/Geneticist
Greece (1) / 2 / Psychologist
Spain (1) / 2 / Psychiatrist/Ethicist
Rumania (1) / 2 / Psychiatrist
Israel (1) / 2 / Psychiatrist
Luxembourg (1) / 1 & 2 / Patient Organisation
Appendix 2
Questionnaire of the first Delphi round on ethical issues in research into Alzheimer’s Disease
The first question is related to traditional biomedical (i.e. non-genetic) research into AD
You may think, for example, about research into various risk factors for AD
- Please list below the ethical issues that in your view are the most important for current biomedical research into the causes of Alzheimer Disease. The importance may be explained, for example, by the following factors:
- Demented patients are more vulnerable and need more protection than other people;
- Certain ethical issues now may hamper biomedical research;
- Certain ethical issues in this area still need to be resolved;
- The societal or legislatory debate around an issue.
Please state shortly why a topic is of great importance on your list.
The following question is specifically related to genetic research into Alzheimer Disease
- Please list below the most important ethical issues of genetic research into Alzheimer Disease. The importance may be explained, for example, by the following factors:
- Demented patients are more vulnerable and need more protection than other people;
- Certain ethical issues now may hamper biomedical research;
- Certain ethical issues in this area still need to be resolved;
- The societal or legislatory debate around an issue.
Please state shortly why a topic is of great importance on your list.
Appendix 3
Questionnaire of the second Delphi round
Ethical issues in non-genetic research into Alzheimer Disease
Question 1
Are there topics you would like to add to this list?
Question 2
Please list below in order of priority the five ethical issues mentioned above, which you consider most important to be discussed in this project
Question 3
Please give some arguments for the priority of ethical issues as listed under question 2
Ethical issues of genetic research into Alzheimer Disease
Question 4
Are there topics you would like to add to this list?
Question 5
Please list below in order of priority the five ethical issues mentioned above, which you consider most important to be discussed in this project
Question 6
Please give some arguments for the priority of ethical issues as listed under question 8
Appendix 4
Results of the second Delphi round
1.Ethical issues in non-genetic research into AD
PriorityTopicScore
1.Informed consent issues52
2.Vulnerability (false hope; last chance/oppurtunity)19
3.Is therapy cost effective/evidence based?14
4.Therapeutic/preventive implications of research13
5.Proxy consent12
6.Negative side effects/risks of research10
6.Respect/dignity/integrity10
8.Availability of data for research (biobanks)9
8.Moral responsibility, Competence of decision-making
capacity/assessment of competence9
10.Supervision of patients8
11.Ethical decision makers not necessarily ethical issues
may hamper research6
11.AD patients should always be considered as ‘moral subjects’ in
the research and not as ‘research objects’/definition of moral subject6
11.Communication difficulties6
11.Availability of counselling6
15.Requirement of a specific patient evaluation before the study5
16.Stigma4
16.Double blind research hampers access to care4
16.Confidentiality data/bodily material4
16.Discriminatory effects/privacy issues4
20.Research results may have impact on life of family members3
20.Anonymised data should be available for research3
20.The risk the research reduces the autonomy of patients3
20.Protection of the patient’s rights, health and dignity3
20.Protection3
20.Advance directives3
20.Applicability of research models3
20.Information on research is not suitable for patients3
20.Involvement of family members3
29.Family2
29.Communication2
29.Ethical review committees2
29.Acquiring samples for research2
29.Withdrawal of consent2
29.Difficulties to find valid and universal inclusion and exclusion criteria2
29.Access to research results2
36.Restrictive legislation1
36.Bureaucracy1
36.Good methodology of research1
36.Public and user engagement1
2.Ethical issues in genetic research into AD
PriorityTopicScore
1.Informed consent issues27
2.Confidentiality of genetic information26
3.The right not to know/access to information23
4.Implications of results for relatives21
5.Proxy consent15
6.Awareness of the implications of participation in genetic research13
7.Treatment of AD with genetic approaches11
8.Different consequences for different subgroups of patients9
8.Interests of patients9
8.Involvement of patients in later stages of dementia research9
11.Discrimination8
11.Neglecting risks/burdens for patients8
13.Insurance/employment issues7
13.Availability of counselling7
13.Legal issues/EU legislation7
16.Genetic screening6
16.Implications of research results for health care delivery6
18.Cost-effectiveness of genetic screening5
18.Use and conservation of samples for clearly defined purposes5
20.No geneticisation: people are more than their genes4
21.Privacy issues3
21.Protection3
23.The role of review committees2
23.Geneticisation2
23.It concerns research, not standard clinical practice2
23.Diagnosis of AD with genetic approaches2