III. THE BENELUX COUNTRIES

The Benelux countries—Belgium (population 10 million), the Netherlands (population 15 million), and Luxembourg (population 400,000)—with three languages (Dutch, spoken by 20 million; French, by 5 million; and German, by 500,000), and two Christian religions (Roman Catholicism and Protestantism)—have been leaders in European bioethics. Institutes for bioethics were founded in these countries in the early 1980s, the region's universities developed a full curriculum for medical ethics, and European bioethics associations of both organizations and individuals were founded in the Benelux nations.

Of the three possible approaches to medical ethics—the deontological, the forensic, and the philosophical–theological approach—the third one, particularly since the 1960s in Belgium and in the Netherlands, has produced a considerable amount of literature in both religious and lay ethics.

During the 1960s, early warning signals were issued by physicians and philosophers. Prominent among them was Jan H. van den Berg (1961; 1969), who warned against inevitable medical failures once patients become objects of medical science instead of persons and subjects of care.

The real boom in bioethics, however, did not come until the mid-1970s and 1980s, when bioethics gained institutional status. From then on, not only doctors and a few ethicists but also ordinary people, among them patients and politicians, became interested in bioethical issues. In 1974 a famous case of active euthanasia in the Netherlands, in which a physician terminated the life of her terminally ill mother at the latter's request, marked the beginning of a debate that would last several decades.

The institutionalization of bioethics is apparent in the existence of three centers for bioethics in Belgium (two in Brussels, one in Leuven) and six centers in the Netherlands (Amsterdam, Ede, Groningen, Maastricht, Nijmegen, Utrecht), as well as in a number of interfaculty working groups. In Luxembourg a national consultative ethics commission for the life sciences and health has existed since 1988 by government decree.

Belgium

In 1993 Belgium underwent a major constitutional change. Belgium became a federal state made up of three communities (French, Flemish, and German-speaking) and of various regions. Bioethics has been impacted because issues are always compounded by the institutional complexities of multiple governments, parliamentary assemblies, and powers. The Belgian approach to AIDS provides an example: preventive measures are taken by the communities, healthcare is provided by the federal state, and the hospital infrastructure is established by the regions (Binamé). Religiously speaking, the country was almost entirely Roman Catholic, though in matters of medical ethics—for example, contraception—a group of postwar Catholic doctors and moral theologians of the personalist tradition had taken a rather liberal stance. The Roman Catholic Church still plays an influential, albeit no longer a decisive role in Belgian bioethics in the twenty-first century. Academically, its bioethical message is carried by the universities of Leuven-Louvain, Namur and Antwerp. However, during the last decades of the twentieth century strong lay trends entered bioethics. The universities of Brussels, Ghent, and Liège established centers or study groups for bioethics. In 1973 the Belgian Society for Ethics and Medical Ethics was founded. Since 1990, this association has had a Flemish-language section. Other important societies are: The Belgian Academy of Medicine and the National Foundation of Medical Research.

Medical ethics at universities was usually taught by faculty from either theology or philosophy departments. Rare exceptions where physicians taught medical ethics, such as Marcel Renaer at Leuven, proved the rule. In 1980 Leuven University created a chair of medical ethics that was held by Paul Schotsmans in 2002. The Leuven (Flemish-language) center and the Louvain (French-language) center, under the direction of Jean-François Malherbe and his successor Michel Dupuis, developed teaching programs for medical ethics at the graduate level and for members of ethics committees. The annual conventions on health law at Ghent University, started in the 1960s, bring together health lawyers and bioethicists from around the world.

LEGISLATION. The federal government took several initiatives in encouraging the development of bioethics. In 1987, the Ministry of Public Health organized a national convention in order to explore the key bioethical issues of the future. The congress was expected to generate significant policy recommendations. In fact, only a general proposal resulted: that vehicles for ongoing debate should be created and that medical practice ought to be protected against wild growth and carelessness in the new fields of biotechnology. In 1993 the National Consultative Bioethics Committee was created with thirty-five members. Its major task is twofold: to provide advice in the field of biomedical ethics, be it on request or on its own initiative; and to provide information to the public at large. Belgian legislation at the federal level covers the following bioethical areas: blood (1961, 1971) and issues of the contaminated blood (1994); organ transplants (1986); artificial insemination (1987); abortion (1990); human genetics (1992); euthanasia (2002); and patients' rights (2002). At the level of the French community, an agency for the prevention of AIDS was created in 1991.

ETHICS COMMITTEES. Strictly speaking, Belgium had no law on human experimentation as of 2002. In 1999 the Hospital Act (1964) was amended by an article that made the presence of an independent review board compulsory, thereby providing these boards with a legal basis. In fact, ever since the early 1980s, ethical guidance and control over biomedical experimentation emanated from the Order of Physicians. Their National Council had already developed a set of ethical rules and guidelines in what was called a "code of deontology" by 1975, to be respected by all physicians. Then, in 1976, the National Foundation for Medical Research charged an ethics committee with as a prime task, the review of research at university centers. In the 1980s, several academic institutions insisted that medical research be done under proper ethical conditions. University hospitals and major centers quickly established institutional review boards (Delfosse). In 1984 the National Council ruled that research ethics committees had to give their approval before research could be initiated in any hospital. At the beginning of the new millennium, close to two hundred ethics committees were in place. Gradually many of these ethics committees have expanded their mandate: the original research ethics committees also became hospital ethics committees, thus covering clinical cases and healthcare policy. In principle these committees are advisory. It is fair to say that during the 1990s efforts were made to create greater consistency, if not uniformity, in the normative as well as the procedural working methods of ethics committees.

The Netherlands

Medical ethics in the Netherlands has, over the years, gained a solid basis and infrastructure. Most universities have medical faculties or working groups where medical ethics is taught. Research and training institutes provide medical ethics information for healthcare institutions and for policymakers, and, joined by professional organizations, they offer systematic ethical training for healthcare workers. In the world of healthcare, numerous ethics committees are in place, and at the public level, the media and politics play an important role. During the 1960s Christian traditions lost their grip on social life, leaving a gap that was gradually filled by, among other things, the new (medical) ethics. The debates in the Netherlands on contraception, on abortion, on euthanasia, as well as all other debates on bioethics, were characterized by lively public participation, including patients and their organizations, as well as the movements for autonomy and self-determination. Dutch society, known for its tradition of tolerance, has displayed an increasing moral permissiveness in problems of biomedical ethics (Moor). In the immediate post–World War II period, a number of theologians as well as physicians were active in the field. Many bioethicists, even into the twenty-first century, have a religious if not a theological background, although a profound change has occurred in their interaction with society. Having gone through secularization, many of them have acknowledged the humanum as a basic norm that carries common agreement in this pluralistic society.

INSTITUTIONALIZED BIOETHICS. Institutionalization of bioethics in the Netherlands is best illustrated in the area of ethics committees for both research and hospital ethics. The number of independent review boards (IRBs), which began to be established in the early 1970s, grew rapidly after 1984; hospital ethics committees (HECs) seem to have grown more slowly, mainly after the mid-1980s. IRBs needed several years of adjustment after the introduction of a European Directive for "Good Clinical Practice" (1993) (Berghmans et al., 1996). Finally, in 1999, the law on Medical Scientific Research was introduced. Since then, a tendency toward the legalization of ethical issues seems to have taken over (Dupuis).

A number of professional organizations (of physicians, nurses, and hospitals) have their own study services for ethics that help them to research and develop policies in healthcare. The six established centers for bioethics as well as medical schools run teaching programs, services to clinics and physicians, and research projects in bioethics.

Dutch society, particularly Dutch political society, has at its disposal five major advisory organs to assist in making healthcare decisions: the Health Council, the National Council for Public Health, the Sickness Fund Council, the Central Organism for Fees, and the College of Hospital Provisions. All these organizations may offer advice without being asked. The Netherlands Organization for Technology Assessment monitors the ethical aspects of applied medical technology.

Dutch universities played an important role in the development of medical ethics. In the 1970s the universities of Maastricht (Paul Sporken), Nijmegen (Theo Beemer, Maurice de Wachter), and Leiden (Heleen Dupuis) were leaders in curriculum development. During the 1980s several other teaching units were established throughout the country.

MAJOR TOPICS. During the 1960s discussion of bioethics in the Netherlands focused on contraception and abortion; since then, the new reproductive technologies have attracted increasing interest. Euthanasia has been a key issue since the 1970s, and scarce resources and distributive justice, since the 1980s. A few issues that otherwise might not have been considered of importance have become so due to their link with scarcity of resources; for example, reproductive technologies, organ transplantation, the issue of insurance in the context of clinical genetics, and access to healthcare, especially waiting lists. Pervading all of these major topics is the recognition that patients' autonomy is quasi-absolute. A patient's choice is often considered to constitute the value of medical service. This is particularly true for decisions at the beginning and the end of life.

DECISIONS CONCERNING THE END OF LIFE. Euthanasia remained, in principle and for many years, punishable under criminal law although it became legal under certain conditions, such as voluntary request, hopeless suffering, and a second opinion provided by a colleague physician. Furthermore, a lenient jurisprudence was favorable to the medical practice of euthanasia and assisted suicide during the decades after 1974. Despite the publication of well-documented national surveys (van der Maas et al.; van der Wal et al.), stating that only 2,300 cases of requested euthanasia and 400 cases of assisted suicide occurred, as well as 1,000 cases of active termination of the patient's life without request, some estimates still range between 2,000 and 20,000 cases of euthanasia per year. Another critical point of discussion was the low instance of notification by physicians to the forensic doctor about their practicing euthanasia. By 1995, 6 out of 10 cases of euthanasia still remained unreported. In 1998 five regional evaluation committees started evaluating all notified cases and would then report back to the Attorney General and Health Inspection. In January 2001 a law codified what already existed: carefully performed euthanasia and assisted suicide, followed by notification, would exclude physicians from being prosecuted. Dutch euthanasia practice and legislation is perceived as exemplary in several countries, including Belgium, although the legislation is strongly opposed by others (Keown). It is fair to describe the Dutch euthanasia development over the decades as a transition from a moral debate, carried out on a large public scale during the 1970s and early 1980s, to discussions during the 1990s about careful implementation of policies, procedures, and guidelines, bringing about a clearer perception of the real practice.

HEALTHCARE SYSTEM AND REALLOCATION ISSUES. The Dutch healthcare system is based on principles of egalitarianism and solidarity. The latter principle is characteristic of the financial organization of healthcare in the Netherlands. In the modern welfare state, the moral principle is not primarily to feel individually responsible for others in need but to be held communally responsible for helping those in need. In a sense society imposes the duty to contribute financially in order to succor the needy in society. Individuals agree with this principle out of well-understood self-interest (Government Committee). At the same time, in the actual system of healthcare distribution, regulatory and marketing strategies are not necessarily contradictory (Wachter). While the population does not like cuts in healthcare or increased premiums for healthcare insurance, there is general agreement that healthcare is for all, and that the cost of individual preferences of patients beyond the basic package should be paid by the individual. The list of items excluded from the basic package around the turn of the millennium included only dental care for adults. But critics also lobbied to privatize cosmetic surgery, nursing luxury, homeopathy, physiotherapy beyond nine sessions, and alternative medicine. The government has legislated on hospital provisions (1973), on fees (1980), and on budgeting in hospitals (1983), but some problems, for example the waiting lists, remain. During the 1990s, a reform system based on the following principles was introduced: (1) private initiative is possible, and government controls only quality of care, access, and cost; (2) hospitals may plan according to local needs; and (3) insurers are free to market care.

REPRODUCTIVE TECHNOLOGIES. During the 1980s the emphasis on reproductive technologies was prominent. In 1981 abortion was legalized, offering women in distress the possibility to be treated in officially licensed clinics. A conscience clause warrants the right of healthcare workers to refuse to participate. Meanwhile, artificial procreation had become the issue of the day. Commercial surrogacy remains prohibited; artificial insemination by donor is increasingly available in all kinds of relationships. Follow-up studies have shown that no serious problems have arisen in either the physical or the psychological development of children conceived through in vitro fertilization (IVF) (van Balen).

ORGAN TRANSPLANTATION. The Organ Donation Act (1998) was meant to increase donations, to provide for the just distribution of organs, and to fight commercialization. In fact, it appears that there are fewer donations every year. The main reason for this failure is the opting-in system, where only the individual can decide to donate. But then, only one-third of the adult population returned the request to the Central Organ Donor Registry.

CLINICAL GENETICS. Several commissions have studied issues of genetic counseling, registration, access, screening and testing, as well as therapy. During 1990 the government took a position on various issues. For instance, the government agreed with the intention of the private insurers to exempt applicants from the obligation to disclose data resulting from a previous genetic diagnosis. In the case of life insurance, for example, the exemption applies to a limit of 250,000 florins, meaning that for insurance below that amount the insurer will not ask for genetic information. The insurers have shown readiness to try this policy for five years, and have repeatedly renewed this agreement. They also will not ask for additional genetic investigation. Based on principles of privacy, confidentiality, and solidarity, this position finds broad support among ethicists. Also in the context of clinical genetics, the government asked in early 1993 that the research community end all embryo research of its own volition. Moreover, several governments intended to prohibit by law numerous types of embryo research, such as research on embryos older than fourteen days and the creation of embryos for the sole purpose of research. Although it had been suggested that the use of fertilized eggs as a source of stem cells in therapeutic research be accepted (Evers), the Embryos Act of 2002 prohibits, for a period of at the most five years, the creation of embryos—be it by IVF or by somatic cell nuclear transfer—for the sole purpose of research.

Luxembourg

The smallness of the territory of Luxembourg and the closeness of contacts intensify mutual knowledge and exchange of information. Within medical circles there is a remarkable amount of self-regulation under the guidance of the "collège médical," approved by the Minister of Health. In 1991 this body laid down an official compendium of laws, the "Mèmorial." Doctors and hospitals are still accepted as decision makers in healthcare. Public debate on issues such as euthanasia has rather been scant (Gillen). Having no medical school of its own, Luxembourg sends its medical students to neighboring countries, where they study in Belgian, French, or German universities.

In 1988 the government established the National Consultative Committee on Ethics in the life sciences and health care. As an advisory group it is supposed to study problems in a pluralistic perspective and to suggest solutions. The commission is also expected to develop programs of public information in bioethics. Reports thus far have covered patenting genetically modified organisms, reproductive technologies, youth protection, genetic research, and anonymity.

Ethics committees in hospitals and research centers are being developed in the early twenty-first century.

maurice a. m. de wachter (1995)

revised by author

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