Michael Fuchs National ethics councils - Deutscher Ethikrat

Michael Fuchs National ethics councils. Their backgrounds, functions and modes of operation compared
However, the main emphasis falls unequivocally on the medical application of
certain procedures to human beings. Particular attention has been devoted in this
connection to reproductive medicine and genetics and their significance for diagnosis
and therapy. A major part has also been played by issues of research ethics as more
strictly defined (e.g. research on subjects incapable of giving consent). In addition,
ethical issues in psychiatry have been considered on a number of occasions in Italy.
Not only the issues themselves are important, but also when they are addressed.
For instance, the Nuffield Council turned its attention to xenotransplantation early
on, while the French Committee considered the treatment of embryonic stem cells
even before human examples had been cultured for the first time. Such possibilities
exist only where the bodies concerned are partially free to make their own choice of
issues to address. The majority of ethics bodies seem to set their own priorities. In a
few cases, the issues to be addressed were fixed temporarily by the founding legislation.
Even in countries where referrals from institutions of state and from third parties
are relatively frequent, such as France in particular, committees have evidently
retained sufficient independence to work, even in the relatively long term, on important
issues of their own choosing, and thereby prospectively to address ethical topics
of the future. Other essential elements in this respect are contact with research institutes
and communication with local ethics committees.
Precisely in view of the diversity of these bodies from country to country, it is emphasized,
finally, that the term “ethics commission” or “ethics committee” actually denotes
three or four quite different types of bodies and missions. In addition to
advisory bodies at European, national or provincial level, there are commissions with
regional or institutional competence for the examination of research projects involving
human subjects, as well as locally or institutionally competent commissions intended
to advise on clinical decisions. Finally, the term can also be applied to bodies
devoted to good scientific practice and the avoidance of misconduct. However, it can
certainly not be taken for granted that these various tasks will be reflected in the establishment
of a corresponding number of institutions. The examples from the Baltic
countries, central Europe and, in some cases, other continents show that this differentiation
has not been implemented universally, nor, presumably, is it everywhere
deemed necessary. In countries with a two-tier system of examination of research
projects involving human subjects, in particular, a distinction can be drawn between
the Danish model (establishment of a central commission alongside the Council of
Ethics) and the Lithuanian paradigm (in which all functions are integrated).
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5. Right of referral
Although nearly all the founding instruments specifically mention the institutions of
state as enjoying the right of referral, a liberal approach to access to ethics bodies
seems to be the rule internationally. In this respect, the ad hoc commissions are
sharply distinguished from the permanent bodies discussed here. However, a wide
variety of tendencies are observed in referral practice. Overall, referrals by governments
and ministries appear to predominate, but this situation may be offset in some
countries by large numbers of minor referrals from individual research workers or
members of the public – although minor referrals of this kind do not give rise to
large-scale reports and fundamental analyses.
6. Advisory mandate
None of the bodies described here as paradigms has legally binding decision-making
powers. In some cases, the central coordinating body for local ethics commissions
operating in accordance with the Helsinki Declaration constitutes a separately functioning
part of the national ethics council. Where this is case, as for example in
Lithuania or Slovenia, positions adopted by the national ethics body may have direct
legal effects. In most cases, on the other hand, the functions of examining research
projects and of general bioethical advice are clearly divided among different institutions,
as in France and Denmark. A restriction to advisory and consultative activity
is also often expressed in the body’s name. Depending on its mission, institutional
framework and specific historical development, the proximity of an advisory body to
the executive and the legislature may vary.
7. Influence on legislative procedures
In continental European jurisdictions at least, identification of a need for legislation
appears to be a central task of national ethics committees.Yet there are institutions such
as the Danish Council that are internationally regarded as successful although they
have not manifestly influenced actual political decisions. Conversely, others, such as the
Nuffield Council in the United Kingdom or the Italian Committee, have occasionally
exerted a substantial influence. In eastern Europe, where many countries lacked specific
laws on bioethical issues before the national councils were established, these bodies
have sometimes even taken the initiative for the formulation of such instruments.
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