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

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.

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

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

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

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

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

ETENE Act on the Status and Rights of Patients amendment May15th, 1998 (330/1998) Decree on the National Advisory Board on Health Care Ethics 26.5.1998 (494/1998)

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

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

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

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

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

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

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

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.

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.

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?

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

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