Introduction
In Scandinavia, the debate on problems in the field of bioethics intensified in the early 1990s and focussed, like in many other countries, on themes like abortion and prenatal diagnosis, euthanasia, care of terminally ill patients, research ethics, gene-ethics, compulsory care in psychiatry, and resource allocation in health care.
In Sweden, The National Council of Medical Ethics (SMER), described in the previous volume of this yearbook, has continued its work and organized hearings and seminars as well as published books [97,98]. The delegation for medical ethics of the Swedish Medical Society (Läkarsällskapets delegation för medicinsk etik) has arranged mini-symposia and published ethical guidelines [100,101] which have been very influential. During this period the Nordic Committee on Ethics in Bioetechnology (Nordiskt utskott för etik inom bioteknologin) has organized a number of workshops dealing with bioethical problems and published reports from these workshops [62,63,64]. The first chair of Medical Ethics in Sweden, to which Göran Hermerén was appointed, was established in 1991 at Lund University.
A number of important basic concepts in medical ethics and the philosophy of medicine, like health, disease, quality of life have been treated in several books published during this period by Lennart Nordenfelt [60,61]. These works discuss problems of definition, of measurement, as well as the importance and role of these concepts. For example, a subjective conception of quality of life is advocated in [61] and the implications, the pros and cons, the possibilities and limitations, of such a conception are explored. A Finnish article has also examined the concept of disease [78], others have examined the issue of medical paternalism [27,44,46], and the problem of confidentiality [45].
Quite a few books in this field have been published from 1991 and onwards. These books are of somewhat different character. During the period both books intended to promote public debate [97,98], anthologies [50] and general works of a text book character have been published [6,8,104,105,108], as well as a survey of ethics committees dealing with problems in health care [22].
The debate about bioethical issues in Denmark has been growing during the years covered by this volume, partly because of the sustained efforts of the Danish Council of Ethics (DCE) to foster a broad public debate. Apart from its reports to the Danish government, the Council has continued to produce films, collections of short stories and poems and educational materials concerning different ethical issues. It has also sponsored several essay competitions for high-school students as well as for the general public. The DCE has not been successful in terms of impact on the policies pursued by Parliament and by the Ministry of Health, but it has been very successful in terms of educating the public and in terms of promoting a genuine discussion in the popular media. As an example of this success can be mentioned a package of educational material focusing on communication between patients and health care personnel which was used by more than half of all hospital departments in Denmark [18].
In 1992 the Danish research councils funded two large 5-year research projects on bioethics. One of these is concentrated around the relationship between bioethics and bio-law, while the other looks more broadly at questions concerning the foundations of bioethics and the application of "bioethical knowledge". There are now groups working in bioethics at several universities in Denmark, and it is expected that this influx of resources will further invigorate Danish bioethics.
There has also been a vigorous public debate in Norway, partly in response to a number of government reports and because of the activities of the various official committees which have been established in the broad field of bioethics and research ethics. The debate has focussed mainly on issues of gene technology and health care resource allocation. As in many other European countries, most of the involvement in bioethics takes place within the framework of the various official committees. There has been comparatively little independent academic research in bioethics, in applied ethics, and in general ethics, but hopefully that will soon change as a result of the generous funding of research in this area. An important book on the legal status of the fetus and the issue of abortion has also been published [102], and a study of the ethical reasoning of health care personell [109].
This paper is meant to be informative rather than argumentative. Needless to say, this survey is selective and makes no claim of completeness. We have concentrated on the official documents (which are in languages not read by most people) and the discussion which followed their publication.
Each of the brief sections is devoted to a major aspect of the Scandinavian bioethics discussion. There is some overlap between the sections. For example, it is not possible to maintain a sharp distinction between problems raised by prenatal diagnosis and problems raised by gene technology. The final sections covers a variety of miscellaneous items.
New reproductive technologies and practices
The new Danish law on research ethical committees passed in 1992 (see more below) also regulates experiments on fertilized human ova, and embryos, as well as certain aspects of IVF treatments (L1). Research is only permitted if it aims at the improvement of IVF or other infertility related techniques, and only during the first 14 days after fertilization (para 14.1-3). Fertilized ova that have been used for research must only be placed in a woman's womb if there is no risk of transmission of genetic defects and no risk of deformity or handicap in the resulting child. All experiments aimed at cloning, production of human-animal or human-human chimeras, or the maintenance of human conceptuses in the womb of animals are forbidden (para 15.1-4). These rules about research replace the earlier absolute moratorium on research on fertilized ova and embryos in the 1987 law which also established the Danish Council of Ethics (L2). With regard to infertility treatment, donation of fertilized ova is explicitly forbidden (para 14.5) and the Ministry of health has issued a circular concerning the freezing of fertilized and unfertilized ova, in which the maximum allowable storage time is set to 1 year whereupon the material must be destroyed (L3).
The Ministry of Health and Social Affairs issued its report to the Norwegian Storting (Parliament) on "Biotechnology related to Human Beings" on March 12, 1993 [81]. In this report the Government points out that IVF now is an accepted method of treatment of infertility. However, according to the Norwegian Act No 68 of June 12, 1987 relating to artificial procreation, IVF could only be carried out with the ova and sperm of married couples, and the embryos could only be implanted back into the woman's body. Although anonymous sperm donation is permitted, egg donation is not. The Government does not see any difference in principle between egg donation and sperm donation, and consequently wanted to open up for access to dispensation on special medical reasons from the ban on egg donation. Artificial procreation should also be made available for unmarried (heterosexual) couples in steady relationships, and donor sperm should be permitted with IVF. The same Act bans research and embryos and fetuses; the Government now proposes that research on embryos can be carried out on surplus eggs after IVF treatment, with the written, informed consent from the couple from whom the embryo orginated, and only until the embryo is 14 days old. The Government obtained Parliamentary approval for all of its proposals, except the one on egg donation. The issue of research on embryos caused an extensive media debate before the report was discussed in Parliament; the National Medical Research Ethics Committee, a government appointed committee, had earlier recommended that all research on fetuses, including research on embryos during the first 14 days, should follow the same guidelines as other human subjects research, which means that only research which could benefit the fetus would be allowed. The Committee came to this conclusion because it believed the guidelines in the Declaration of Helsinki should be binding also for research on fetuses, on the grounds that there is a reference to the Declaration of Geneva in the introduction.
The issue of reproductive technologies has also been discussed in Finland [77].
Abortion and prenatal diagnosis
A useful survey of the medical background and the present possibilities with their ethical implications was recently published by a group of experts in Sweden [3].
Abortion and prenatal diagnosis have continued to be the theme of many debates in Sweden during 1991-93. In a way, the Swedish Parliament put an end to this debate by deciding in October 1993 that at the present time there was no reason to change the present laws in this area (Socialutskottets betänkande 1993/94: SoU 2, page 19).
Some writers [23] stress that the application of advanced methods will give rise to new hard ethical questions in this area, wehreas others have spoken out more clearly in favor of or against, the new technology. For example, on utilitarian grounds the moral philosopher Torbjörn Tännsjö has advocated a liberal policy [105]. Happiness or welfare should be maximized in his view, and we have a positive, moral obligation to procreate. It is up to every individual to decide if and to what extent assisted insemination should be used. This liberal principle, however, is abandoned in the discussion of egg donation and surrogate motherhood. In [104] this author holds that in certain cases, for example when the fetus suffers from Krabbe's disease, there is a moral obligation to perform an abortion.
The Swedish Medical Society (Svenska Läkarsällskapet) has proposed ethical guidelines for how to deal with some of the more pressing problems in this area [101].
The use of tissue from aborted fetuses has also been discussed in a Swedish governmental report [93]. The report focusses on the use of such tissues in attempts to cure e.g. Parkinson's disease, and suggests guidelines for this. The commission stressed that tissues from aborted fetuses must only be used under certain strict conditions and only if there is no alternative method to obtain the same result.
The commission also proposed that tissues from aborted fetuses may be used for medical purposes only if the woman has expressly and explictly given her consent, and that the time and method used in the abort must not be influenced by considerations as to what is best for the medical use of the tissue in question. It is also suggested that commercial use of tissues from aborted fetuses be prohibited.
As could be expected, some people have criticized the conclusions. But on the whole, the report was favorably received, but one commentator [53] though agreeing with the conclusions of the report, suggested that the principle of the sanctity of life should have been discussed (and rejected) in the report.
This report was published by the commission on transplantation and organ donation, which finished its work during this period by discussion problems of autopsy, dissections and donations of dead bodies for anatomical purposes [95].
In Norway, the same Government report mentioned above also discusses the issue of prenatal diagnosis [81]. The Government proposes new legislation which will cover all diagnostic investigations of sperm, embryos, fetuses and pregnant women. New diagnostic tests to detect genetic diseases can only be introduced after approval by the Ministry of Health and Social Affairs. Diagnostic investigations should not become part of routine proeceures for all pregnant women. The tests should be an option "for women who, based on an assessment of their total situation, are uncertain as to whether they or their famiilies will be able to take responsibility for a child with serious development anomalies, and where there risk of the foetus having a serious disease or defect is greater than normal, or where there are other, special medical grounds". Methods to determine the sex of the child before the 12th week of pregnancy (i.e. up until the time-limit when the mother can decide on abortion) will not be permitted, except in cases of serious sex-linked diseases.
The issue of prenatal diagnosis had earlier caused an extensive media debate because the Norwegian Medical Association had in a position paper made the claim that it would be a great advantage if conditions such as Down's syndrome and Huntingdon's disease could be completely eliminated. This was by some interpreted as a statement that people with such conditions had no right to live, although the Norwegian Medical Association made it clear later that it had not talked about people, nor touched on the issue of abortion, but only had intended to say something about diseases qua conditions, and that one should welcome new therapeutic methods for these conditions [2,14,49]. A number of commentators have also pointed out that new diagnostic technology such as ultrasound have made it possible to diagnose abnormalities earlier in pregnancy, thereby possibly increasing the number of abortions, not only for serious diseases, but also for minor abnormalities such as a cleft palate [83,84].
Research ethics
In 1992 a law was passed establishing a two-layered system of research ethics committees (RECs) in Denmark (L1). The system established is very similar to the previous extra-legal system established in the late 1970s which was based on an agreement between the Danish Medical Association and the Danish Counties. The new system consists of 7 regional RECs each covering one or several counties, and a central REC for the whole country. The regional RECs have 7-11 members and there is a requirement that the number of lay members in a REC should be 1 larger than the number of professional members (so called "parity + 1"). The lay members are appointed by the county councils and are usually "lay" in a real sense and not recruited among hospital chaplains, lawyers etc. [35]. The RECs are funded partially by the counties, partially by a fee of approximately 400 USD levied on each research project submitted for approval. Researchers are legally required to submit all biomedical projects concerning living human beings, human tissue, fertilized human ova, embryos, or fetuses for approval to the regional REC covering their institution. In cases where the regional REC denies approval, the researcher can appeal to the central REC. The decision of the central REC is final and cannot be challenged in any higher administrative body, but only by bringing a civil suit in the courts. Violations of the act can be punished by fine or imprisonment. The new law gives the RECs a legal right to monitor ongoing research. They are also given a duty to inform the public of new developments in research ethics and to promote public debate. The ethical principles used in the assessment of research projects are modelled on the Helsinki-II declaration with later amendments, but there is one important exception. All research on competent individuals require signed informed consent, and there is no equivalent in the Danish law to paragraph 2.5 in the Helsinki-II declaration, which gives a committee a possibility to waive informed consent "If the physician considers it essential not to obtain informed consent..." Several recent Danish studies of the quality of research protocols submitted for review have shown that the written information given to patients about research projects often lacks essential pieces of information, like information about the right to withdraw at any time, and that the information sheets are frequently difficult to read [36,38]. It has also been found that the considerations stated in the obligatory "Ethical issues" section in the protocols are often mere platitudes like "This protocol is submitted for ethical review" [37]. The functioning of the committee system has been discussed extensively during several "rounds" of media attention, but the discussion has been almost totally futile, because the criticisms have mainly consisted of unsupported allegations of partiality and of general "doctor-bashing".
In Sweden commentators have also pointed out that the existence of research ethics committees do not in themselves guarantee that adequate information is given [48]. It has also been suggested that these committees should change praxis, concentrate on projects that raise hard questions from an ethical point of view and give reasons for the decisions more than is done at the present [57].
The problems raised by epidemiological research are not explicitly mentined in the declaration of Helsinki. The requirement of informed consent is important when patients take part in experiments, answer surveys or are interviewed. In Sweden this has been stressed in for example [32].
The basis of the requirement of informed consent is the principle of autonomy. This principle is, however, not uncontroversial. As is well known, it can be justified and interpreted in several different ways. Moreover, the autonomy of patients has to be somewhat balanced against the autonomy of health care staff [15].
But disregarding these problems, when an epidemiologist studies data registers, he or she does not come into contact with patients in the same way as in experimental research, and these patients do not participate in his or her research in the same sense as patients participating in experiments.
Reasonable guidelines for epidemiological research should try to strike a balance between the (expected) importance and utility of the research results and the invasion of integrity and inconvenience caused by the patient by the research. Some articles in Sweden have focused on several aspects of these problems during 1991-93, for example [55,114,115].
Informed consent to treatment
On October 7, 1993 the Norwegian Supreme Court decided its first informed consent case. The case concerns a patient where a lung tumor was was diagnosed on X-ray in 1982. During follow up 1986 it appeared that the tumor had increased in size. A surgical removal was therefore recommended and carried out. It turned out that the tumor was a neurinoma (Schwannoma, a benign tumor). After the operation the patient has suffered from decreased function in his left hand in addition to Horner's syndrome with drooping of the eye-lid. The patient took this case to the courts on the grounds that he was not informed about the possibility that the tumor might be a neurinoma, that there would be a high likelihood of nerve damage in such a case, and that he would not have consented to the operation had this information be given to him.
The Supreme Court first established that patients have a right to information about the purpose of the treatment, about the probability that it will give the desired result and about the complications and adverse effects which may occur. This is because of the patients' right to self-determination. Physicians must therefore inform the patients adverse effects which are very probable ('overveiende sannsynlige').
The Court discussed the probability that it might be a neurinoma, and concluded that there was a real possibility, although the probability that it was such a tumor was probably not very great ('betydelig'). The issue is therefore whether a physician should provide information about risks which are not very great. In such cases the guiding principle is that the patient must get information which does not omit significant ('vesentlige') risks. In particular it is important that information is given about risks in cases where there are real choices.
The Supreme Court found that the physician did not have a duty to disclose this type of information in this case. Information was given on the basis of a defensible diagnosis, and the patient was not given the impression that the diagnosis was certain. The risk of neurinoma was not very great ('betydelig').
There are a few interesting things to note about this decision. First, for those who have followed the US legal and ethical discussion about informed consent, the absence of the notion of what a reasonable person would want of information is noteworthy. Second, the Court seems to have concluded that since the diagnosis is defensible ('forsvarlig') in this case, the physician was under no obligation to disclose information about other possible diagnoses. Third, although the Court concluded that probability that the diagnosis was a neurinoma was not very great ('betydelig'), it made no attempt to ascertain whether information about this possibility would be significant ('vesentlig'), or whether this piece of information would leave the patient with a real choice of whether to undergo the operation or not, despite the fact that it had introduced this as a criterion for the adequacy of information. In spite of this it seems one can conclude that the Norwegian Supreme Court has decided that patients have a right to information which reasonable people will regard to be important when making a decision about treatment, but that in this particular case the information that the tumor might be a neurinoma would not make a difference concerning what option reasonable people would choose.
According to Norwegian law, a physician can withold information from a patient if he or she feels that it may harm the patient. The Supreme Court indirectly upheld this principle by pointing out that the issue of harming the patient was not at issue in this particular case. The same principle has also been affirmed by the Norwegian National Committee on Medical Research Ethics in its report on genetic registers [51].
A Norwegian goverment report published in 1991 took up the problem of the legal rights of people with mental handicap [65]. In Norway a reform in the care of these people had been introduced where the guiding principle was that institutional care should be minimized as much as possible, and they should be cared for in their local communities, living in their own apartment or house. This raises the problem of how to justify the use of force in treatment, education, training and care of patients with psychological handicap. The report suggest that all use of force, except in emergency situations where the criminal law of self-defence is applicable, should be governed by regulations about how to proceed, rules about control mechanisms, and about who is responsible. Since at issue is treatment or care without the informed consent of the client, the committee responsible for the report commissioned another report on how to understand the informed consent requirement with regard to decisions concerning people with mental handicap, written by the lawyer-physician Aslak Syse. In this chapter there is also a general discussions of informed consent to treatment. The chapter points out that the requirement of informed consent to treatment has been strengthened in Norway during the past few years, although it also points out that the Norwegian legal tradition goes very far in accepting presumed ('stilltiende') consent to treatment.
Equitable to health care
Health care in Denmark is financed by taxes and governed by the Danish counties which also own most hospitals. Traditionally patients have only been able to obtain free treatment in their own county, unless they needed special treatment that was only available elsewhere. Private hospitals have been virtually unknown. This system is now changing rapidly in an attempt to establish some form of "internal market" in health care, both in Denmark and in Sweden. The barriers between counties have been almost completely abolished and patients can now choose freely between hospitals. In order to remove the previous obstacles for patient choice rapidly the counties and the Ministry of Health have unfortunately chosen a method of reimbursement between counties that establishes perverse incentives for health care providers and health care administrators. It has been decided that payment should take the form of a fixed sum per treatment day or per visit to an outpatient clinic. This creates incentives to keep patients from other counties in the hospital longer than necessary, since it is the later, less labor intensive, days of the hospitalization that generate the largest surplus. It also creates an incentive to keep patients from one's own county at the bottom of the waiting list, since their treatment does not generate any visible income. At the same time, dissatisfaction with the waiting time for some elective operations have created a market for private hospital care, and several private hospitals and clinics have emerged, mainly specializing in elective orthopaedic, ophthalmic, and cardiac surgery. This has happened even though waiting times have not been increasing. Media reports have from time to time prompted specific interventions from the authorities to reduce specific waiting lists, but no general coherent policy has been formulated. The Ministry of Health and the Danish Council of Ethics are both presently preparing major working papers in this area.
Conceptual, empirical and normative issues have continued to attract attention in the public debate on resource allocation in health care in Sweden [89]. Doctors, economists, philosophers and theologians have contributed to this debate [1,71].
The discussions have tried to clarify both the very notion of setting priorities, and the ethical principles that should be used to guide prioritizing, as well as specific proposals as to what should be given higher or lower priority [30,54,58].
The governmental commission that was appointed in 1991 to deal with these questions have published a discussion report [96] in November 1993. The purpose of the report was, among other things, to stimulate debate, not to provide ready solutions, to discuss the ethical starting points and to clarify some of the key concepts in the debate (like health, illness, justice, need, etc.), to clarify the many different problems in this area and to trace their relations to each other, and to to come up with suggestions about how resources should be allocated.
This report has already started a very lively debate. The final report is expected to be published next year, and in a subsequent yearbook its contents and the discussion which followed its publication will be commented on.
As is the case in the other Scandinavian countries, Norway has a National Health Care System. All Norwegians are insured through this system and it is financed through compulsory taxation. Unlike the United Kingdom, the private health care sector is very small, limited to a few clinics, mainly in the Oslo area. These clinics provide supplementary health care. It is, however, not possible for a Norwegian citizen to opt out of the National Health Care System and buy his or her own private health insurance.
During the past few years there have been a number of mass media reports of patients being denied presumed beneficial health care by the system. The system continues to suffer from long waiting lists. Even though the Government has introduced a 'waiting list guarantee' which gives patients with certain conditions a guarantee that they will be treated within 6 months, there has only been a small reduction in the number of patients with these conditions who have waited longer than 6 months for treatment. The issue of health care resource allocation or rationing has thus entered the public debate, as it has in most other countries.
The fundamental moral problem facing a system such as Norway's is how one should distribute scarce health care resources within a national system with an almost non-existent private health care system and private health care insurance. In other countries citizens who are dissatisfied with the basic package provided by the Government can buy supplemental health care insurance. This is not possible in a country such as Norway. Those treatments that are not provided by the system to everybody are not available to anybody. Until now this was not regarded as a problem, because it was generally believed that the national system offered all beneficial treatments to everybody. A few well publicized cases during the past few years in Norway have, however, questioned this belief. It is now increasingly being recognised that the system is not able to provide all beneficial treatments to everybody. If it is necessary to ration health care, it becomes necessary to address the question how this should be done in a justifiable way within a national health care system.
One case which was reported in the newspapers in the beginning of 1993 may be used to illustrate the Norwegian debate. This was a 53 year old patient with chronic myelogenous leukemia. The patient was himself a physician, and wanted bone marrow transplantation as a treatment for his condition. Without transplantation he would certainly die within a few years at the most; transplantation was his only chance of a cure. In Norway, bone marrow transplantation and all other transplantation procedures are carried out in the National Hospital in Oslo. The bone marrow transplantation unit refused to carry out the procedure on this patient.
It is somewhat uncertain what the basis was for the refusal. In the refusal letter the transplantation group argued that patients such as this 53 year old man had such a bad prognosis with transplantation that it would not be medically indicated to transplant him, and that the Norwegian policy in this regard was in accordance with the policies of transplant centers in other countries. In the newspaper debate, however, the issue of resource allocation was prominent. Because of limited resources not all patients who could benefit from transplantation could be treated and it was necessary to prioritize. The basis for such decisions was spelled out in a policy document from 1992. In a situation with scarce resources the patients who could benefit the most from transplantation should be transplanted first. If a particular patient was given the option of transplantation, all patients with similar prognosis should also be offered transplantation. There was no capacity to transplant all patients with the prognosis of this 53 year old physician in Norway, and consequently his request should be refused.
Some patients in Norway in need of bone marrow transplantation have been sent to other countries for transplantation, if it was felt that the procedure was medically indicated, in line with the principles of prioritization outlined above, and there was not sufficient capacity at the national transplantation unit in Oslo. Such treatments have been paid for by the National Health Service, if the application is approved. The basis for the approval is that there is lack of capacity in Norway, the patient seeks an established form of treatment, and the treatment can not be postponed. This patient thus requested that a bone marrow transplantation be done outside of Norway. The bone marrow transplantation group at the National Hospital also recommended that this request be refused on the same grounds that the request to be transplanted in Norway was refused.
It turned out, however, that this physician had sought a second opinion at a transplantation unit in the US. There they had told him that his survival chances with transplantation would be around 40%. It is unclear what survival chance the Oslo team had used, but it was much lower than that. Given this favorable prognosis from the US, the physician felt that it was unfair that he was being denied treatment and went to the mass-media with the story.
During the subsequent media debate, two issues emerged. One concerned the decision-making procedure, and the other the issue of scarcity of resources. The initial decision about whether to transplate an individual patient is made by the transplant team at the National Hospital. If there is not a sufficient capacity at this hospital, the same team recommends treatment outside of Norway. If the patient is denied treatment in Norway or outside of Norway, the patient can appeal this decision. Since there is only one bone marrow transplantation team in Norway, the appeal is also being reviewed by the same people who made the initial decision to refuse to recommend transplantation. It was this procedure which was under criticism in this particular case. Given that physicians outside of Norway apparently gave this patient a better prognosis than the experts in Norway, it was felt to be problematic that the patient was not given a chance of a second opinion in the review of the case.
The other issue concerned scarcity of resources. It was argued that the National Health Care System had responsibility for all patients in Norway. The system should therefore ensure that treatments are provided in accordance with the priorities set out in a Government policy document on resource allocation, in a way that is fair to all citizens of Norway. This means that it may not be possible to provide expensive, experimental treatments to patients in Norway, although such treatments may be available for a few patients in other countries. The Norwegian state is committed to providing a system that is fair to all, but not to provide to all its citizens all those treatments that may be provided to some patients in some countries.
This particular patient appealed directly to the Health Minister to reverse the decision, given the favorable prognosis from outside experts, and given the unsatisfactory nature of the decision making process. The Minister granted this appeal, and the patient was transplanted in the United States. In spite of this, however, the patient died of his illness some time after the transplantation procedure later the same year.
Cases such as this one, where a patient is denied an expensive treatment, have of course been reported from other countries. What makes this one particularly interesting is that it raises some important issues of resource allocation for Welfare States with a single National Health Care System. One should note the following points about this story. First, the decision about whether to recommend treatment or not was made by one group of physicians and there was no mechanism for obtaining a second opinion, inside or outside the country. Second, decisions about the financing of treaments, whether inside Norway or outside of Norway, were made by the National System, without a possibility of opting out of the system, or of buying significant supplemental health insurance. Such a unitary system, where decisions about the provision of health care are made by a relatively small number of individuals with little external review of the decision making procedures, raises the question of how one can ensure that the rights of the citizens with regard to the provision of health care are being respected in cases where the individual disagrees with the decisions made by the system, as was the case with the bone marrow transplantation patient referred to above.
A report commissioned by the Government and published in 1992 has addressed this issue [66]. The aim of the report is to suggest new laws or regulations which will increase patients' rights in the Norwegian Health Care System. The report distinguishes between rights in a strong sense and rights to rationed services. Citizens of Norway have certain rights in the strong sense, such as a right for all to attend school between the ages of 7 and 16. People have, however, only rights to rationed services to the extent that there is money for the services. Although the law in Norway stipulates that a county is responsible for providing health care for its citizens, the law only gives a particular patient a right to treatment to the extent that there is capacity and resources in the system to treat that particular patient (except for emergency care). A legal right to health care is therefore a right to rationed services. A judgement by the Norwegian Supreme Court in 1990, however, indicates that there is a right in the strong sense in Norway at least to a certain minimum of services from the health care sector, although that minimum is not specified [21].
Decisions about what health care services to provide are made locally at the county level in Norway. There is at the present time little the National Government can do to ensure that national priorities concerning which patients should be treated first are followed by the local communities. One recent attempt has been to introduce regulations which gives patients with certain conditions a right to be treated within six months. The fact that there still is a high number of patients with these conditions who have waited longer than six months shows that there is not a yet right to treatment in the strong sense for these patients. The report argues that it is only by introducing a legal right to health care in the strong sense that one can ensure that the fundamental health care needs of the population are met, and that national priorities are followed at the local level. It therefore proposes that a law be adopted which specifies that patients with serious illnesses shall have a right to treatment within 60 days of diagnosis. A serious illness is an illness which will prevent normal activities to a considerable degree, or which will reduce life expectancy to a significant degree, if there is reason to believe that treatment can lead to a significant improvement in the medical condition, significant increase in quality of life or significant increase in life expectancy. In the proposed law there are also informed consent requirements, and requirements that health care is provided in an adequate way and that the integrity of the patient is respected.
If this law is adopted it would be illegal for local communities not to provide enough resources for health care in such a way that patients with serious diseases are not given treatment within 60 days. If this right is not fulfilled, the patient will have a right to economic compensation until treatment is provided. If a patient disagrees with a decision that is made concerning whether he or she has a right to health care, the patient can complain to what are the Regional Health Officers ("Fylkeslegen"). It is also possible to use the courts. The report also suggest that a "National Medical Ethics Board" should be introduced which can give advice to health care providers about those cases which represent grey areas with regard to whether they are "serious" illnesses or not.
The report has not yet resulted in any changes in the law, but the Health Ministry is now in the process of writing a report to the Norwegian Parliament about health care resource allocation questions. Furthermore, as a result of the debate following the bone marrow transplantation case, an advisory group to the Health Ministry has been established. This group will among other things review applications for treatments abroad, and if necessary solicit second opinions from experts outside of Norway. It is unclear, however, if these measures will address the fundamental question of the individual's right to be involved in the decision making process. The review board appointed by the Health Minister has for example been criticised because it does not include any patient representatives, but instead is composed of people too close to the bureaucratic and expert communities.
A few research reports on questions of resource allocation from the Norwegian perspective have been published [59,69].
A number of articles have discussed the same issue from a Finnish perspective [40,73,74].
Decisions to withold or withdraw life-sustaining treatment
In 1992 the Danish parliament enacted a law concerning living wills (L4). The new law establishes a central register for living wills, and stipulates a standardized format for living wills. Previously the area was regulated by a press-release from the Danish Board of Health (Sundhedsstyrelsen), dating from 1974 (L5) which stated that it was not against Danish law to discontinue futile treatment. During the final stages of the legislative process, the proposal was fundamentally changed following extensive and successful lobbying by an organization called "Mit Livstestamente" ("My living will"), which since 1976 has worked for the legal recognition of living wills. The provisions in the law and the format for the official living will form, which finally passed in Parliament, resembled the wishes of this organization so closely, that it has now dissolved itself. Living wills can only be registered if they are submitted on the appropriate form. No witnesses are required, but the living-will register will write back to the person in question and ask for a small registration fee (approx. 6USD), thereby trying to ensure that the person whose address and personal ID number is on the form has really filled it in him- or herself. The form has three parts, each outlining a separate scenario, and one or all of these can be chosen. The three parts are:
1. I do not want life-extending treatment if I am in a situation where I am irreversibly dying.
2. I do not want life-extending treatment in cases where disease, advanced senility, accident, cardiac arrest, or similar conditions have caused such a severe state of disability that I will be permanently physically and mentally unable to take care of myself.
3. If the situation described in 1 should occur I do want to be kept free from pain with painrelieving/sedative drugs even though this may bring the moment of death forward.
The law states that the wish expressed in part 1. must always be respected, whereas the wishes expressed in part 2. & 3. can be overridden, but only after careful consideration on the part of the responsible physician. The living will becomes active as soon as the situations described in part 1. or 2. occur, and Danish doctors are required to contact the living-will register by phone whenever they initiate treatment of a patient in one of these situations. 6 months after the establishment of the register it had, however, only received about 40 calls! The Danish Medical Association (Den Almindelige Danske Lægeforening) has voiced sharp criticisms of the law and of the process leading to its enactment [85,92,103]. The four main points of criticism, which also summarize points raised in the public debate, are:
a. There is no time-limit on the validity of a living will;
b. Because of the relative "informality" of the procedure necessary to register a living will there is no way to ensure that the person in question is competent to make a decision of this sort;
c. The wording of the actual living will form is not clear. Especially the phrases "I am irreversibly dying" in part 1 and "that I will be permanently physically and mentally unable to take care of myself" in part 2 are open to a wide range of interpretations;
d. The actual procedure necessary to ascertain whether a living will is registered for a specific patient is to cumbersome and time consuming. One cannot expect an emergency room physician to leave the treatment of his patient for an extended period of time, just in order to find out whether a living will has been registered.
There are at present, one year after the establishment of the register, 65.000 registered living wills.
Denmark has, like many other countries, also experienced a growing debate about euthanasia, but there are at present no signs pointing in the direction of a legalization or quasi-legalization of euthanasia. The same holds for Sweden and Norway.
During the period two new documents in Sweden, one by Socialstyrelsen and the other by Läkaresellskapet [91,100] have suggested guidelines concerning when a doctor may forego treatment.
The general idea in both is that care must be given, but treatment may be terminated. The patient's expressed wishes should be respected, but the doctor makes the decision. In [91] it is explicitly stressed that life must not be prolonged against the expressed will of the patient.
Although the legal aspects are not quite clear, the general consensus among doctors, lawyers, and ethicists seems to be that a doctor would not be sued for what he or she has done, as long as he or she has followed rules on which there is general consensus among doctors [41].
Should doctors always, and at all costs, try to save life? The problem is illustrated by the case of the German pregnant woman in Erlangen who was declared brain dead after a traffic accident.
In Sweden, as in many other countries, this case has been the subject of several articles, both in the daily newspapers, and in journals. Did the German doctors do the right thing when they treated the mother's body like an incubator and tried to save the baby? Which are the reasons for and against [7,26,33,34,107]?
With few exceptions, it was considered that the time the baby had to stay inside his or her mother's body was too long and that there was no valid ethical justification for the attempt. Anyway, something like this could not happen in Sweden, given the present rules and practice.
In SOSFS 1993:6 it is explicitly said that if a pregnant woman becomes brain dead, and the pregnancy has gone so far that the fetus is judged to be viable, the woman may be delivered of the child. In such situations active intensive care may continue for a few hours or a day and night, till the woman has been delivered of a child, possibly with a Caesarean section.
The issue of witholding and withdrawal of life-sustaing treatment has also been discussed in Finland [45].
Active euthanasia
Euthanasia has also during this period continued to be a main theme in Sweden. The debate has focused on conceptual, empirical as well as normative issues. The experiment in the Netherlands, and the evaluation of the Dutch experiences, have been commented on by many writers [98].
The definition of euthanasia, the distinction between active and passive euthanasia, as well as the doctrine of
double intentions and effects have been challenged [31,106], and the arguments for and against various positions have been analyzed.
More specifically, the Remmelink report has been cited and criticized. The extent to which cryptotanasia occurs in the Netherlands and in other countries has been discussed, as well as the difficulties of correctly estimating this [9,39]. In addition, reports have been published of empirical studies of the attitudes of doctors and medical students to specific problems in an number of different situations [56,70]. The results from a Norwegian survey indicate that there may be a discrepancy between the negative attitude to euthanasia in the medical profession and a more positive attitude in the population [111].
In the series on problems in medical ethics that has been published in Läkartidningen during this period, euthanasia (active and/or passive) has probably been the subject of more articles than any other single topic during 1991-92. Advocates of palliative care, critics of passive euthanasia, discussions concerning futility of treatment, as well as of who should decide (doctors, patients, relatives,priests, ethics committees?) are some examples of problems raised in this series [5,72].
This topic has also been the subject of an extensive media debate in Norway, following the revelation that a physician had given a lethal dose of a drug to a patient with terminal cancer at his or her request. It was in the beginning unclear whether the drug was given with the intention of alleviating the pain of the patient or with the intention of ending the life of the patient. The Norwegian Medical Association made it clear that it continued to oppose active euthanasia, although it realized that it might be permissible to give drugs in order to alleviate pain in such high doses that it might shorten the life of a patient [4,80,86,87].
Organ donation and transplantation
As reported in the last volume of this series on "Regional Developments in Bioethics: 1989-1991" the Danish parliament in 1991 established a central national donor-register in which individual persons can register whether or not they are willing to donate organs. At present 111.000 citizens have submitted a registration form, of these 100.000 have registered a wish to donate and 11.000 that they are not willing to donate. The public debate in connection with the law and subsequent adverse media reports of competition between Danish transplantation centers have led to a decrease in the number of organs secured for transplantation and there is presently a shortage of such organs.
Compulsory care in psychiatry and in HIV treatment
Socialstyrelsen in Sweden has prepared a video, a report [90], and organized debates in many parts of the country when a new law concerning compulsory treatment in psychiatric care had been passed and was to be implemented.
According to the new laws there are different rules for compulsory psychiatric care of persons suffering from serious psychiatric problems ("allvarlig psykisk störning") and for compulsory psychiatric care of persons who have committed some criminal offence ("psykiskt störda lagöverträdare"). The intention behind the new law is to strengthen the legal protection of patients and to minimize the use of compulsory care in psychiatry.
In the wake of these activities, some articles discussed the ethical justification of compulsory care; under what circumstances, and in what situations, can it be defended, and perhaps even obligatory, to treat patients against their will? And how does this square with the increasing emphasis on patient autonomy in a number of international guidelines, such as the declaration of Hawaii [10,47,88].
Similar problems arise in the care of HIV/AIDS patients. Can compusory treatment be justified, and if so, under what circumstances and in which situations? Several contributions speak out clearly against compulsory treatment of these patients, and argue that it is morally wrong to use compulsory care of patients, anticipating future crimes [11,99].
Because of media reports that certain psychiatrists in Norway had practiced lobotomy in a way that could not be ethically or legally defended, the Government appointed a comittee to examine Norwegian lobotomy practice. The committee delivered its report in 1992 [67]. It found among other things that Norway had had one of the highest number of lobotomies per capita compared with other countries, and that the operative mortality during the first years was 27%. The committee found reason to criticise the physicians because they did not take the high operative mortality seriously, and because they were more liberal in their indications for lobotomy than warranted by the international literature. The report has also an extensive discussion of the issue of informed consent to psychiatric treatment in general and to invasive psychiatric treatment in particular. An overview of the debate is given in [12].
Gene technology and ethics
Following the publication by the Commission for the European Community of a draft-directive on the legal protection of biotechnological interventions (i.e. about patents on living organisms and parts of the human genome), the Danish Council of Ethics has issued a statement in which it advises against the introduction of patents on parts of the human genome [16,19].
The Danish government has in 1991 and 1992 proposed legislation prohibiting the use of genetic testing or the use of genetic information by employers and insurance agencies. The proposals have been supported by the labor unions and criticized by the employers. The same proposal has been reintroduced in 1993, but it is uncertain whether it will die in committee like in 1991 and 1992. The Norwegian Government has proposed similar legislation in its report to the Parliament [81]. In addition, it proposed that all new predictive tests be approved before they are introduced, and that genetic tests only be done after councelling and consent. Genetic engineering has also been the topic of a number of reports in Finland [28,29,75,76,77,79].
The government report on the challenge of gene technology and the new biology in Sweden [94] gives a broad survey of the problems in this area and proposes some guidelines for how they should be handled. Here the needs and interests of the research community and industry are stressed, and a somewhat more restrictive policy has been advocated in the subsequent debate, as well as in the later published Miljöbalken (The Environment Act), SOU 1993:27.
The possibilities as well as some of the ethical problems raised by the Human Genome Organization Project are presented in [110], prepared by a group of experts and published by the Royal Academy of Sciences in Stockholm. The Hybrid DNA delegation is also active in this field and has recently published a book on ethical problems raised by applications of the new genetics on man, animals and plants [25]. The authors include Göran Hermerén, Mats G. Hansson and Nils Uddenberg.
Problems of GMO's (gene-technically modified organisms) as well as problems concerning patents and patentability of life were the themes of two workships organized by the Nordic Committee on ethics in biotechnology, both of which resulted in publications [63,64]. Gene-therapy is also being discussed more and more [24,25]. Ethical guidelines have been proposed and discussed for predictive and prenatal diagnosis of diseases like Huntington's chorea by a group chaired by Jan Wahlström [112].
It is proposed in these guidelines that presymptomatic testing should be available to those who wish to be tested, taking into account if the individual knows enough about the disease and the test to be able to make an autonomous decision, if the individual's reasons for the desire to be tested have been understood, if there is a possibility to follow up the result of the test, and if a good contact has been established with the entire family of the tested individual.
Gene-ethics is clearly emerging as an increasingly important and difficult field in bioethics. Sweden is no exception, though research on the ethical, legal and social impact of the genetic technology has had a slow start here, as in many other countries. The explanation may be simply that though it has often been declared that a certain percentage of money allocated for the HUGO project should be set aside for such research, so far very little money has been ear-marked for research in this area.
In 1993, the Medical Research Council along with several other research councils organized a conference "Genetisk innsyn" in order to identify and systematize researchable problems in this area. In the next year, the proceedings from this conference will be published.
Health registers
The Commission of the European Community (now renamed the European Union) is working on a directive concerning the storage, retrieval, linking, and transmission of person-identifiable information. This prompted the Danish Council of Ethics (DCE) to take up this topic in the context of health care research. The DCE published several working papers during the process [43,52,82], and a final set of proposed principles for regulation in 1992 [17]. These principles are very restrictive, and Danish epidemiologists have claimed that they will make it impossible to do good epidemiological studies in Denmark [16]. The most controversial point is the proposal that any collection, storage, or use of stored person-identifiable information should only be permitted if the persons in question give written informed consent. This would for instance make any research using the Danish National Patient Register, which contains diagnoses and dates for all admissions to hospitals in Denmark, impossible. Even if the object of the study was as trivial as the establishment of the incidence and prevalence of appendicitis in different age groups, it would require the explicit informed consent of all persons in the register (approx. 3 mio. people). Because of these effects on research, it is unlikely that the position of the DCE will be adopted by the Danish government or parliament.
In 1993 a Norwegian government report issued recommendations concerning the legal basis for health registers [68]. The point of departure for the report was a proposal that a central health register in Norway should be established with medical and administrative information about all patients who had stayed in somatic hospitals. In the ensuing debate, some maintained that it was morally and legally problematic to have information stored in person identifiable way in a central register, without the consent of the people concerned. The committee responsible for the report pointed out that there were a number of registers in existence in Norway which made possible useful epidemiological research. The committe nevertheless found it problematic that information about identifiable individuals could be found in such register, and therefore recommended that such registers be based on pseudonyms. According to this proposal, each person in Norway would be given a unique pseudonym, which would be kept by a trusted government agency. When information about a patient is transferred to the central register, the government agency would remove the name of the individual and attach the pseudonym to the information. In this way it would be possible to link information about individual patients in the register without the information being linked to an identifiable individual. The pseudonyms would never be available to anyone using the register, except the patient himself or herself, who would be able to check that the information was accurate. Two members of the committee dissented, however, arguing that the existence of such a register where it at least theoretically would be possible to link the information to identifiable individuals was morally and legally problematic. It would not be possible to guarantee that the information necessary to identify the individuals in the register were not made available at some future time to researchers who would argue that this was necessary to carry out research they felt to be of great importance.
The National Medical Research Ethics Committee has also issued its recommendations concerning genetic registers [51]. The Committee recommends that one needs to obtain the informed consent of the people who are in such a register, that a person can demand to be removed from the register, and that it should be prohibited for insurance companies and employers to obtain data from the register. The report discusses at length the issue of genetic councelling on the basis of register data.
Other issues
Among other topics that have been discussed, perhaps the extensive comments and debate on the new formulations of the ethical roles for doctors (including rules of conduct) should be mentioned [42,113].
The delegation for medical ethics of the Swedish Medical Society (Läkarsällskapets delegation för medicinsk etik) has published a book with interesting cases and comments for the period 1982-87 [13]. This book will be a goldmine for those interested in case studies for a long time to come, apart from being a valuable contribution to the history of Läkarsällskapet's activities.
No official initiatives have been taken in the area of AIDS policy in Denmark, and the official policy is still to depend on active information of the public and the special risk groups as the primary means for controlling the spread of the disease. There has not been any attempts to reinstate the law concerning venereal diseases repealed in 1988, and there are therefore no formal mechanisms for tracing or notification of contacts. There is growing dissatisfaction with this state of affairs among medical doctors, and several have publicly declared, that they would not maintain confidentiality if a HIV infected person refuses to inform his or her partner. There have been two court cases brought against persons who have had unprotected intercourse while knowing themselves to be HIV-positive. A Haitian immigrant has been sentenced to 1 years of imprisonment for recklessly endangering the lives of others. He is known to have had unprotected intercourse with at least 23 women. Because of its principal nature the case has been appealed to Højesteret (the Danish supreme court) where it is now awaiting trial. In another case a Danish woman has been sentenced to three months imprisonment for assault after having had one unprotected intercourse. In neither case has the partners been infected.
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88. Silfverhielm, H. and Hammer, I.: 1993, "Kulturkrock för läkare och mer krävande jour vägs mot ökad rättssäkerhet och klarare linjer", Läkartidningen 90, 3403-05.
89. Socialstyrelsen: 1991, Prioritering inom hälso- och sjukvård - en debattskrift, SoS-rapport 1991:19, Stockholm.
90. Socialstyrelsen: 1991, Tvång - autonomi. Etik i psykiatri. SoS-rapport 1991:19, Stockholm.
91. Socialstyrelsen: 1992, Livsupperhållande åtgärder i livets slutskede, Stockholm, (Allmänna råd och riktlinjer 1992:2).
92. Spang-Hansen, A.: 1993, "Livstestamentet - juridiske betænkeligheder", Ugeskrift for Læger, 155, 188-191.
93. Statens Offentliga Utredningar: 1991, Aborterade foster, m.m., Betänkande av transplantationsutredningen, SOU 1991:42, Stockholm.
94. Statens Offentliga Utredningar: 1992, Genteknik - en utmaning. Betänkande av Genteknikberedningen. SOU 1992:82, Stockholm.
95. Statens Offentliga Utredningar: 1992, Kroppen efter döden. Slutbetänkande av transplantations-utredningen, SOU 1992:16, Stockholm.
96. Statens Offentliga Utredningar: 1992, Vårdens svåra val. Rapport från utredningen om prioriteringar, SOU: 1993:93, Stockholm.
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99. Stiernsted, G.: 1991, "Fel spärra in för förväntade brott", Läkartidningen 88, 591
100. Svenska Läkaresällskapet: 1992, "När får läkare avstå från behandling", Läkartidningen 89, 2165.
101. Svenska Läkaresällskapet: 1993, "Prenatal diagnostik - etiska aspekter. Riktlinjer från Läkaresällskapets etikdeklaration", Läkartidningen 90, 2232-36.
102. Syse, A.: 1993, Abortloven. Juss og verdier. Ad Notam Gyldendal, Oslo
103. Sørensen, K.H.: 1993, "Livstestamentet - for dårlig information", Ugeskrift for Læger, 155, 192-193.
104. Tännsjö, T.: 1991, Göra barn. En studie i reproduktionsetik. Sesam, Stockholm.
105. Tännsjö, T.: 1991, Välja barn. Om fosterdiagnostik och selektiv abort, Sesam, Stockholm.
106. Tännsjö, T.: 1992, "Oklar, irrelevant distinktion aktiv-passiv dödshjälp", Läkartidningen 89, 2888-9.
107. Tännsjö, T.: 1993, "Ska vi rädda hjärndödas barn?", Läkartidningen 90, 683.
108. Tännsjö, T.: 1993, Vårdetik. Andra utökade upplagan, Thales, Stockholm.
109. Uden, G. et a.: 1992, "Ethical reasoning in nurses' and physicians' stories about care episodes", J Adv Nurs 17, 1028-34.
110. Vetenskapsakademien: 1992, Vem i hela världen är Hugo? Människan och den nya biologin, Stockholm.
111. Vigeland, K.: 1991, "Holdning til aktiv voluntær eutanasi", Tidsskrift for den norske lægeforening, 111,460-3.
112. Wahlström, J.: 1992, "Prediktiv och prenatal diagnostik av Huntingtons sjukdom - etiska riktlinjer", Läkartidningen 89, 2294.
113. Westerborn, O. et al.: 1992, "Läkares etik, (jämte). Kommentarer till läkarreglerna, I-II", Läkartidningen 89, 9-10; 89-90.
114. Westrin, C.-G. et al.: 1991, "Longitudinal studies on environmental factors and disease. A model for analysis of ethical conflicts", Scandinavian Journal of Social Medicine 19, 81-85.
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Statutes etc.:
L1: Law 1992-06-24 nr. 503
L2: Law 1987-06-03 nr. 353
L3: Sundhedsministeriet, Cirkulære 1992-07-22 nr. 650
L4: Law 1992-05-14 nr. 351
L5: Sundhedsstyrelsen, j.nr. 1910-121-1974