presented at the Bioethics "Mega-meeting" in Pittsburgh, Spring, 1995
Bioethics today occupies an increasingly important place in public discussions in a number of different countries, on all continents. In Europe, there now are several national committees, and there are committees on a European level, that initiate debates, and issue policy recommendations on such topics as genetic predisposition tests, embryo research and new reproductive technologies. New research centers in bioethics are being established in a number of different countries. This is a marked change from around 15 years ago, when there was very little activity going on in medical ethics outside the US. Those of us outside the US who at that time ere interested in working in this field, did not ind much intellectual support in our own countries.
Even though we have witnessed this dramatic nternationalization of bioethics, I believe that it is still fair to say that the field is dominated by he central concepts and the intellectual tools developed in the Anglo-American applied ethics movement. The popularity of the "four principles" is quite remarkable. Nevertheless, there has not been a ack of criticism of some of the central assumptions n US bioethics. The single most frequent criticism of US bioethics heard is that the emphasis on patient autonomy as the central value is foreign to many European or other non-US cultures. Some of the critics point to alternative conceptions of the physician patient or nurse patient interaction, based on notions of community, relationship, or the communicative ethics of Apel and Habermas. Similar criticism can, of course, also be found among US scholars.
Let me give you two representative quotations, one from Europe and the other from the US.
The Dane Søren Holm in the article "American Bioethics at the Crossroads" in the Newsletter of the European Society for Philosophy of Medicine and Health Care this year claims that "American culture has a strange tendency to forget the existence of a world outside of the north American continent...This general cultural condition also influences American bioethics. Important contributions from abroad are neglected or only introduced into the American debate after long delays...The broad field of hermeneutic communicative ethics....and its powerful insights about the necessary conditions for true communication could have tempered the narrow focus on autonomy as the basis for the doctrine of informed consent by providing a complementary relational basis for this notion". (pp. 7-8).
Renee C. Fox has claimed that "The values and beliefs highlighted by American bioethics represent a particular cross-section of the society's cultural tradition. From the outset, the conceptual framework of bioethics has accorded paramount status to the value-complex of individualism, underscoring the principles of individual rights, autonomy and self-determination, and their legal expression in the jurisprudential notion of privacy...In fact, there is a sense in which bioethics has taken its American society and cultural attributes for granted....In its inattention to its 'American-ness' and its assumptions that its thought and moral view are transcultural, American bioethics has been more intellectually provincial and chauvinistic than it has recognized". (pp. 206-208).
Two of the central claims in these quotations are that US bioethics is provincial in its emphasis on autonomy and individual rights, and that one will not find a similar emphasis on autonomy in other countries. These empirical claims do have some normative force. If it is true that we do not find the same emphasis on autonomy within the medical context in other countries, and it is true therefore that the US emphasis on autonomy is provincial, it would undermine the claim that such an ethics should form a general basis for physician patient or nurse patient relationships. The reason for this is that there is no direct connection between an acceptance of autonomy as a fundamental ethical value and statements about what should be done in concrete clinical situations. A number of assumptions about the patients' ability and willingness to understand medical information will for example have to be made. One could also point to the growing number of people in the US who recently have started to favor placing more emphasis on values such as community and the common good, and these people could refer to cultures outside the US for evidence that such values should indeed receive a more prominent place. These empirical claims therefore do have some normative force in medical ethics, and we should examine them carefully.
What, then, do we know about the norms and values that govern physician patient or nurse patient interactions in other countries? The answer is that we know surprisingly little, and much of what we appear to know is based on studies of questionable relevance. Let me only give you two examples.
The first is the often quoted study carried out in China by Fox and Swazey themselves. It is this 1984 publication that forms the basis for the claims about the provincialism of US bioethics, and the claims about the differences between the medical moralities of China and the US. It is important to note that the authors justify their conclusions on the basis of statements made by nurses and physicians, and texts written by nurses and physicians, in China. It may come as a surprise, at least it did to me when I reread this article, but we do not find a single report of an interaction with a patient or one single statement made by a patient in this article. Fox and Swazey therefore base their analysis on what physicians and nurses claim is the proper moral framework for the interaction between patients and health care workers. As we all know, the values of patient autonomy and patient rights are precisely important in those instances where patients disagree with their physicians about what is the right thing to do. If Fox and Swazey want to say anything meaningful about Chinese medical ethics in this regard, they would have to research how patients conceptualize the interaction between themselves and health care workers.
The second example is from an article on the relevance of social anthropology for medical ethics.
The anthropologist Richard Lieban tries to establish that cross-cultural variations in values and social realities affect the ethics of biomedicine by citing an article in the Hastings Center Report published in 1986 on the ethics of treating imperiled or impaired newborn infants. Dr. Subramanian in this article claims that physicians in India, Sri Lanka and Nepal make decisions based on factors such as family composition, the family's ability to obtain further care, and cost factors. Further "Quality of life rather than sanctity of life is a consideration because of a strong belief in rebirth". These claims are not, however, based an any systematic study. In fact they are based on the personal impressions that a physician living in the US has about his own country. Another noteworthy fact is that similarities between different cultures such as India and Sri Lanka are assumed. I think it is quite remarkable, and says something about the state of research in this area, that a social anthropologist has to use this particular article as a proof of cross-cultural variations in medical ethics!
My conclusion therefore is that we should not accept the claim that marked differences exist between medical ethics in different cultures before we have seen good evidence for that claim. By this I do not mean to deny that there are differences between cultures. I only want to emphasize that we do not know what the differences are, and whether the differences are in terms of what is so commonly asserted, namely that there is an emphasis on autonomy in the US (or the West), and an emphasis on community in other countries.
Let me now offer my reasons for thinking that we will see an even stronger emphasis on autonomy and patient rights in countries outside the United States in the years ahead. Again I shall offer two examples.
We are all aware of the ethical problems raised by preventive AIDS vaccine trials. They have been discussed in a number of scholarly papers and in a number of conferences, and I shall not elaborate on them here. The perhaps most difficult one concerns the relationship between developing and industrialized countries. There is no question that we should encourage the development of an AIDS vaccine. We also firmly believe that we should not use populations in third world countries as research subjects for a vaccine that will only be available in the richer countries of the world. WHO has now initiated co-operation with countries such as Thailand and Brazil to begin preparations for large- scale vaccine testing. What is interesting for my topic today is that there a growing awareness in a country such a Brazil that it is necessary to ensure that the rights of the potential participants are not violated if and when trials start, that there is a need to strengthen the ethical review committee system, and that there is a need to emphasize the accepted principles of research ethics developed primarily in the United States. Investigators and policy makers are now actively seeking ways to implement these principles in that country.
The second example is from Norway. Norway has a National Health Care system, financed by compulsory taxation, and with an almost non-existent private health care system. In policy documents from the Government this system has been defended on the basis of the values of social solidarity and egalitarianism. There is, however, a widespread dissatisfaction with the current level of services, and a perception that beneficial treatments are being delayed or not offered within the system. Some have argued that it is necessary to strengthen patient rights, guaranteeing patients a certain level of services, and enabling patients to sue the government if they are denied services. Right now, however, this proposal has been rejected by the government. Instead the Minister has suggested that patients have a right to request a second opinion, but only if their primary physician agrees with this request. No system of independent review of complaints has been proposed. Given the current level of dissatisfaction with this system, I think it is only a matter of time before Norway has to pay attention to what rights an individual patient has vis a vis the Government.
There is a trend in Norway towards an awareness of the need to strengthen the rights of patients.
I therefore do not think that it is particularly fruitful for US bioethicists to reject the central place of the value of autonomy in their quest to become international. At least in the countries I know, an emphasis on community and relationships is more often than not an attempt to strengthen the authority of physicians, other health care workers, and policy makers vis a vis patients.
In the few minutes left of my presentation I shall outline one way that I think that US bioethics, or bioethics research in any nation, can benefit from what goes in other countries and in other cultures. There is of course a need, as I think I have shown, for systematic cross-cultural studies in medical ethics. But I also believe that we have a unique opportunity to revitalize normative bioethics research precisely because of the internationalization of the field. Let me elaborate.
Bioethicists are asked to comment on and say something meaningful about a whole range of cases, the most recent ones in this country being embryo research and wrongful life cases. When one does this it is very easy to get trapped in the day to day policy discussions taking place in a particular country. There is a danger that the issues on the agenda at a particular time and in a particular place will catch everybody's attention, and that the policy solutions considered will be determined by those options that happen to be on the table at that time. I do not want to claim that it is not important to be involved in these actual policy discussions. I only want to suggest that we also need basic bioethics research independent of what catches the public's attention at any given time. Such research sets its own agenda, and is concerned with the conceptual and normative analysis that is necessary to answer some of the pressing policy issues. I firmly believe that an international perspective on one's work will facilitate the development of basic bioethics research because one is forced to consider issues which do not happen to have caught the attention by policy makers or health care workers in one's own country. Let me give two examples of the kind of research I have in mind.
One area concerns ethical issues associated with clinical research and randomized clinical trials. A number of issues have been raised in different countries. In the US, one has been concerned about access to new and promising drugs, or access of women to clinical research. In Germany, a number of years ago, Burkhardt and Kienle argued that randomized clinical trials should be illegal. In the UK, there has been the case of Mrs. Thornton and clinical trials for Duct Carcinoma in situ. In Norway, disagreement about what should count as good clinical evidence is the reason for disagreement about whether bone marrow transplantation for some patient groups should be regarded as experimental or not. And, as mentioned, AIDS vaccine trials raise the issue of international justice. Underlying all of these specific issues are certain unsolved conceptual, epistemological, methodological and normative questions which still have not been solved and which could benefit from the attention of those working in medical ethics.
Another example is the area of health care resource allocation and organization of health care delivery. All health care systems face similar challenges today, and in most countries there is a debate on these issues. In this debate there has been a remarkable tendency to assume, especially among European Bioethicists but also among Bioethicists in the US, that the European systems have solved most of the problems, and that it is only the US that is lagging behind. Careful attention to what goes on in other countries should convince one that this is not the case. Underlying all of the specific issues discussed in any particular country there are again certain unsolved conceptual and normative issues that demand attention. One example of such an issue is how we are going to deal with the obvious conflicts between different conceptions of justice in the health care setting?
In conclusion, I believe that there is a need to pay more attention to basic bioethics research. There are of course already many fine examples of such research, but there is a continuous danger that all of the immediate issues will demand most of the attention of Bioethicists. I hope that the internationalization of the field of medical ethics will lead to an increase in studies with a more theoretical emphasis.