1. The role(s) of national ethics committees: experiences of Finland (ETENE)

2. Background: Need for a national body international development
Nordic experience
Need for a multi-disciplinary expertise for health care sector
Development in the patients´ rights area: legislation
priority setting, reimbursement requirements etc.

3. Other national ethics committees in Finland
National Advisory Board for Biotechnology
Board for Gene technology
National Advisory Board on Research Ethics
Cooperative Group for Laboratory Animal Sciences

4. National Advisory Board for Biotechnology
Promote cooperation in the field of biotechnology
promote international cooperation
monitor the progress in the field
develop and promote research, information and education in biotechnology
promote consideration of ethical issues in biotechnology

5. Board for Gene Technology
Gene Technology Act (No. 377/1995)
processes notifications concerning the use and release of genetically modified organisms
a competent authority towards the European Community
issues instructions and regulations

6. Proposals and statements on legislative and other matters concerning research matters
to resolve issues of research ethics
promote research ethics and discussion on research ethics
international development and collaboration
raise awareness of research ethics at large

7. Cooperation Group for Laboratory Animal Sciences
coordinate research, education and other activities
promote laboratory animal welfare and discussion on ethical considerations in laboratory animal sciences
promote high educational standards at all levels of animal care and research and to raise awareness and increase information available to the general public about laboratory animal sciences

9. ETENE Act on the Status and Rights of Patients
amendment May15th, 1998 (330/1998)
Decree on the National Advisory Board on Health Care Ethics (494/1998)

10. ETENE: duties
ethical issues relating to health care and the status of patients on the principal level
may issue initiatives, statements and recommendations on ethical issues in health care
give rise to a societal discussion
work as an expertise in developing legislation
collect and share information
monitor the development of health care and related technologies
other tasks
forum for discussion, not a decision-maker

11. ETENE: composition chairperson deputy mayor Paula Kokkonen
co-chair Dr. Leena Niinistö
18 members and two experts
health care users and providers
health care professionals
jurisprudence, medical and ethical research
Members of Parliament (> 4)
general secretary

12. Sub-committee on Medical Research Ethics
support of the regional ethics committees
fundamental ethical issues
training
international multi-centre clinical trials
national opinion
collaboration with local ethics committees

13. ETENE: activities meetings 6/yr + 1 day symposium opinions
shared code for people in health care
publications

14. ETENE: activities expertise in developing legislation
Act on the Status and Rights of Patients
Medical Research Act and Decree
EU-directive on clinical trials
Act on the protection of personal data

15. Publications Equity and human dignity in health care in Finland
Shared values in health care, common goals and principles
Ethical Issues related to death in health care

16. Publications
Price of care and equality as an ethical challenge in health care
End-of-life care
Borderline between autonomy and abandonment from the ethical point of view
Multiculturalism in Finnish health care
Report on medical research on children

17. Opinions genetic screening circumcision assisted reproduction
involuntary treatment
psychotherapy
protection of privacy in the health care of prisoners
drug testing during work and employment
etc.

18. International interaction
The Council of Europe
CDBI
national ethics committees
The EU
NEC Forum
National Advisory Bodies
DK: Det etiske råd
S: Statens medicinsk-etiska råd
Bioethics Committee of the Nordic Council of Ministers
CCNE, Nuffield Foundation, etc.

19. National governmental or independent ethics committee?
better economical resources
close connection to legislative structures
connections to health care institutions
dependent on governmental structures?
bureaucracy
may be considered as one governmental institution that approves the activities of the state?

20. Possibilities and problems of national ethics bodies
discussion within the committee and between committees
ways to raise public debate
www
media
events
how to find those concerned
Relieve public fears
discussion -> publicity
expertise
link between society and science
indepencency – dependency
financial issues

21. The future challenges of the national ethics committees
Raising awareness and societal discussion about ethical issues in the health care
-> publicity
-> internet
-> brochures
-> debates etc