Bioethics is a relatively recent discipline that has already greatly evolved. What was its aim initially?
|Interview with Michèle Jean: the drafting of a declaration
|in SHS Newsletter 08
| Michèle Jean, Canada’s former Deputy Minister of Health (1993-98), is Chairperson of UNESCO’s International Bioethics Committee (IBC). She is a historian and has acquired a wealth of experience in the field of ethics in science, particularly as member of the International Institute of Research in Ethics and Biomedicine (IIREB). In this interview, Mme Jean talks about the development of bioethics and of the latest initiative to be launched by UNESCO in this field: the drafting of a declaration relating to universal norms on bioethics.
At its very beginning, bioethics sought to cover everything concerning the life sciences – the environment, animals, etc. With time and practice we saw the sphere of activity focusing on the biomedical, that is, on the doctor-patient relationship and also with the invention of new technologies, on problems relating to decision-making in the medical profession. For example, at what stage should one turn off the life-support machine of a person who is brain-dead? New technologies have posed doctors a number of questions to which they had no answer. Philosophy at that time could not respond to those questions.
But nowadays bioethics also has a bearing on other fields…
Over the years, bioethics has focused on the biomedical field and has widened that scope to include the social sciences – law, anthropology, sociology, etc. – in order to be able to examine the problems linked, notably, to the development of genetics and genomics. There, we have issues that concern not merely the doctor-patient relationship and the health system: for example, DNA tests in a criminal investigation. In addition, if one tackles certain public health issues with different cultural communities, one is often confronted with problems that are both of an anthropological as well as medical nature. That is why the social sciences are increasingly being associated with bioethics.
How would you define bioethics?
Let me give you a practical definition. To my mind, bioethics covers three sectors. First, the clinical sector. This includes issues relating to clinical research, epidemiology and the doctor-patient relationship, etc., with which hospital ethics committees are often faced. Second, there is the field of basic research which has expanded in recent years to include molecular biology, pharmacogenomics, nanosciences and genomics. Third – and I think this is very important – bioethics covers everything to do with the development of public health policies. The clinical or basic research sectors depend on the allocation of funds, that is, the action of decision-makers and political authorities. We have to find a way to make use of them in this field of bioethics. When you look at these three fields, you are faced with major challenges. How can we reconcile the individual’s interests – the patient and also an individual involved in research on population genetics – with the interests of the community?
The International Bioethics Committee (IBC), chaired by you, has been given the mandate to draft an instrument relating to universal norms on bioethics. For whom is it intended?
The declaration aims to provide a framework that can be followed by States when they are setting out their policies, legislation, outlines of good conduct and codes of ethics. It is an instrument to help countries develop their own documents and instruments adapted to their respective cultures and traditions, etc. The challenge is not to lapse into cultural relativism but to produce an outline that is coherent and can be of service to all UNESCO Member States.
Why do we need universal points of reference?
We need them because science is increasingly universal. For example, teams of scientists are often made up of researchers coming from a variety of countries in different parts of the world. And, of course, there has been abuse. The aim of the declaration is to say: science is important, research is important and health systems are important, and we want everything to take place with integrity and transparency, showing due respect for the person or group of people concerned.
By providing this framework, we want scientists and health and social science professionals to be able to integrate ethical dimensions into their practices. The aim is for bioethics not to be secondary but to form a basic part of the parameters that determine the quality of a project, an operation and the doctor-patient relationship. In this age of globalization, we must somehow globalize ethics and set common points of reference.
Take, for example, a country where you have to go through an ethics or bioethics committee and respect certain rules in order to bring a scientific project to a successful conclusion. In order to get round such constraints, nowadays the project is merely transferred to a country that does not have such a structure! In some developing countries, researchers from other countries can collect precious information – particularly on DNA – that will be exploited and used to register patents without the “donor” country reaping the slightest benefit.
The text of this future declaration as it stands at present, is based on a series of fundamental principles, the first and foremost being the principle of human dignity. Can one really define this principle?
The idea is very complex and I don’t think we will be able to give a precise definition. Human dignity can take various forms in different cultures. Others before us have tried to define it but one inevitably comes to definitions that prevent this principle from retaining its universality.
So what is the point?
Human dignity is a concept to be found in several international texts, notably in the Universal Declaration of Human Rights, as well as in the thinking of some philosophers, like Kant. Basically, the advantage of this principle is to bring to the fore a conception of what is human. If we don’t take human dignity into consideration, then what is the point of talking about principles such as autonomy or informed consent? Human dignity includes several things such as a certain respect and a certain tolerance, etc. I think this concept makes up the view or objective we must strive for, so that we could then have a clearer definition of further principles.
But does such a pluralistic approach not run the risk of weakening the instrument?
Indeed, as I’ve just said, we must not fall into the trap of cultural relativism where everything is everywhere and it’s all right to do anything in the name of cultural diversity. That is why we specify in the declaration that there must be no undermining of the values of justice, human dignity and human rights in the name of cultural diversity. Nothing that is implemented must run counter to the general, fundamental principles we are defining. And yet we can – in the way we work and in relation with spirituality and religion – we can move forward in different ways to put these same principles into practice.
The principle of solidarity also takes up a large part of the declaration. What is the declaration’s aim in this connection?
Before getting down to this declaration, we had already produced a report on international cooperation and solidarity. In all the reports and advisory notes of the IBC – because it isn’t only declarations we produce – we call for this principle. It has many implications for health systems, the public health arena and research.
Solidarity means, for instance, sharing research findings. We must make sure that data collected in certain countries cannot be used without those countries being able to benefit from the results. Many ways can be found of sharing the benefits. Particularly through publishing research or establishing mechanisms for sharing resources and funding which take into account the needs of countries that lack vaccines, etc. There are countries at the moment without any basic healthcare or access to medication for certain illnesses such as aids, while other countries are already talking about transhumanism and various ways of altering human beings! Right now what is really important is reducing the inequities in these fields. This is a basic issue of solidarity and sharing of resources – financial and intellectual, as well as technology transfer.
One of the aims of the declaration is to prevent the stigmatization and discrimination of a person or group of persons on the grounds of their physical, mental, social or genetic characteristics. Could you give some recent examples of cases where advances in science have resulted in that kind of risk?
New risks came to light with the development of genetics. For example, if you study the “susceptibility” of a given population to certain illnesses, there is the risk of sections of that population being stigmatised. People who are more vulnerable than others to develop an illness because of their genetic characteristics may find they are refused employment or cannot take out an insurance policy because of the likelihood of their becoming ill at some stage in their lives. How can we ensure that on the one hand epidemiological research – which can benefit from the study of the genetic data of populations – can advance, and on the other, ensure that it does not lead to people being stigmatized? And there is also the issue of community dimensions of consent, for example. If you decide to do a DNA test, it may perhaps reveal certain susceptibilities in your family and thus the family would be affected by the findings. But at the same time we must not “generalize” everything: the individual is made up of genetics, yes, but there are also phenotypes, and the education he/she has received, and his/her surroundings, etc.
The draft declaration emphasizes that advances in science should always tend towards promoting the well-being of individuals and of the human race in general. Might there not be instances where the interests of the individual are in contradiction with those of the community?
The great challenge of bioethics consists precisely in trying to reach a balance between these interests. Here’s an example: if you have some medication that costs us $20,000 per annum, per person, in a State-funded public health system, you will perhaps be obliged not to subsidize that medication because it is too costly and therefore would harm the whole system. There are community interests that must be weighed against those of the individual. I myself studied the question of compensation for hepatitis C in Canada when I was Deputy Minister of Health. We were faced with the problem of deciding whether to give financial help to people with this illness, some of whom had perhaps contracted it through an error on the part of the State and others had contracted it in different ways. Are you then going to compensate every single person and thus create a precedent that is going to jeopardize your whole health system? There are difficult choices to be made when one is with an Administration. Bioethics helps guide our choice of options.
But on a specific issue, such as the one you have just mentioned, how could the declaration have helped in settling the issue?
When we talk about acting for the well-being of a person or persons, the declaration will not necessarily resolve the issue because not everywhere has the same level of social acceptance. But we are hoping to deliver an outline that, when we come to analyse these questions, will help bring about the best possible decisions in any given situation based on the fundamental principles drawn from the declaration.
The declaration has introduced some new or emerging principles such as the principle of accountability. Why have such a principle?
This principle is particularly important given the current context of the advances in science. It touches on all aspects of the issue of the integrity of scientists and their responsibility, and also the responsibility of the individual. It is not often mentioned, but as individuals in society we also have a certain responsibility – with regard to our health, our behaviour, what we eat and how we live – so as not to have a negative impact on the health system or harm our fellow citizens. One often hears “my freedom ends where yours begins” – it’s all a matter of balance.
The procedural principles are among the new ideas introduced by this text. Of what do they consist?
Alongside the fundamental principles and their derivatives, we have also tried to define a group of “procedural” principles. Basically, these also constitute a group of values which aims to determine certain working methods in order better to apply the fundamental principles and derivatives. They apply to principles such as honesty, integrity, transparency and openness, as well as some rational methods employed by scientists. As a scientist, you might say “I am being fair” and yet perhaps you are not being clear, perhaps you are not explaining what you are doing to anyone, perhaps you haven’t proved that your scientific information is complete, etc. So it’s at the level of implementation of the fundamental principles and derivatives that we have introduced this procedural principles category.
All these principles are still very general. Are you not afraid the declaration might become a mere list of good intentions? What use is it really?
The declaration also recommends some fairly concrete measures such as setting up ethics committees, and public debate, etc. On all these issues, we must engage in public debate and establish a dialogue with scientists and civil society, to see how far we want to go and how we can function. All that is very concrete – there need to be ethics committees, there need to be ethics education programmes for scientists and health professionals, genetic advice programmes must be developed, etc. With regard to UNESCO, it is going to develop the procedures of implementation of the declaration, procedures of evaluation and monitoring – all of that will make the declaration come into being. UNESCO is also planning to support the setting up of data banks which will help people to know what is going on in certain countries and help other countries develop their own capacities supported by the practical examples of what goes on elsewhere.
In its preamble, the text of the future declaration refers to a whole series of instruments listing achievements in international law. Given that the declaration will be submitted to Member States for their approval, might this not run the risk of all these achievements being undermined?
The instruments mentioned in the preamble have already been adopted and, as such, cannot be challenged. I think it is useful to have a reminder of these instruments because those who will be using this declaration do not necessarily know about them simply because they may be working in very diverse sectors. Now the question as to whether the declaration itself will fall short of what is set out in the preamble – I certainly hope not! We can be sure that when the Member States come to study the declaration – I happened to notice it in the case of the adoption of the Declaration on Human Genetic Data – it will mean that some States will react, depending on what is happening in their own countries, with regard to their own legislation and type of government. So it may sometimes happen that the interventions of certain Member States fall short of our expectations with regard to the instruments mentioned in the preamble, but there are always other countries that can counteract such views. States generally show plenty of goodwill because they want this work to be useful. They want the declaration to be usable at both national and international level. The declaration should not be an empty shell.
This declaration is for establishing ethical principles to be applied to recent scientific advances. Is it really possible to establish norms that follow today’s pace of science?
Of course, science is developing very rapidly, but in my opinion that is precisely why we need to elaborate this declaration. Besides, the plan is for the declaration to be reviewed subsequently in the light of scientific progress and some of the aspects that may not have been touched on, could be the subject of further study. Indeed, some scientific fields like, for example, genetics, have developed enormously over the past few years. There are some codes of ethics that do not mention this and now therefore warrant revision. But I do not think we should give up simply because science is moving too fast. On the contrary, I think we must continue to develop and maintain ethical frameworks that can be useful. With a good ethical framework, we can follow scientific developments and make any necessary adjustments as we go along – particularly through reports and advisory notes. Nor should we forget that bioethics must be based on a solid, scientific framework; it cannot give opinions on unfounded perceptions.
Interview by Jeanette Blom
UNESCO and bioethics: towards universal norms
UNESCO created the International Bioethics Committee (IBC) in 1993, at a time when the study of genomics and genetics was beginning to develop. The newly established IBC – although at that time, it had no formal structure – was called upon to draft a declaration on the human genome and human rights. The Declaration on the Human Genome and Human Rights was drafted by the IBC and adopted by UNESCO’s General Conference in 1997, and approved by the United Nations in 1998.
In 1998, the IBC was granted a formal structure with statutes, rules and formal working procedures. That same year the Intergovernmental Committee on Bioethics (IGCB) was established, composed of representatives of 36 UNESCO Member States. These two Committees work in cooperation, producing advisory notes, recommendations and proposals which are then submitted to the Director-General for consideration by UNESCO’s governing bodies.
In 2003, the International Declaration on Human Genetic Data was adopted. The same year, both Committees were given the mandate of drawing up an instrument relating to universal norms on bioethics. This draft, which deals with the human being – as a moral subject having responsibilities vis-à-vis animals, the environment and the biosphere – will be submitted to UNESCO’s General Conference in October 2005.
At its 33rd Session, the General Conference of UNESCO adopted by acclamation the Universal Declaration on Bioethics and Human Rights on 19 October 2005.
Photo: © UNESCO/M. Ravassard
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