Read the article below, "Human dignity, key value of bioethics" by Jeanette Blom, SHS for the New Courier in 2004. 

1. Paraphrase Michele Jean's answer to the last question:

This declaration is aimed at establishing ethical principles that will provide a framework for recent scientific progress. Is it truly possible to create norms that will keep up with the speed of scientific evolution?
Certainly, science is developing at breakneck speed, but that is precisely why we need this declaration. In addition, the declaration is due to be reviewed later on to take scientific progress into account so that certain areas that might not be initially covered can be included in subsequent work. I don't think we should give up on moving forward just because science is moving too quickly. On the contrary, we must continue to develop useful frameworks. Once we have a good framework, we can gradually -- notably through reports and opinions -- follow the evolution and make the necessary adjustments. We cannot forget that bioethics must be based on an adequate scientific background and must not make pronouncements based on unfounded principles.

2. You're asked to condense this interview to one lengthy paragraph. Summarize the interview, including two quotes from Michele Jean.

"Human dignity, key value of bioethics" by Jeanette Blom, SHS for the new Courier in 2004.

Human dignity, key value of bioethics
Science is becoming more and more universal. In order to respond to the questions raised by modern science, ethics must go global, with common points of reference established. The International Bioethics Committee (IBC) has been working at this task for several months, creating the basis of a declaration on the universal norms of bioethics.

The IBC will soon hand the baton to government experts, who are expected to meet and generate the final document that will be submitted to UNESCO's General Conference in 2005. IBC President Michèle Jean of Canada answers our questions.    

The New Courier: What will this future declaration include?
M. J.: Taking into account our consultations with UNESCO member states, we've chosen to focus the declaration on human beings as moral actors with responsibilities vis-à-vis animals, the environment and the biosphere. These areas could be the focus of other work done either by the World Commission on the Ethics of Scientific Knowledge and Technology (COMEST), the IBC or other bodies.

Who will the declaration be targeting?
The declaration aspires to create a framework that could inspire states in the implementation of their policies, legislation, rules of good conduct and codes of ethics. It's an instrument that should help countries draft their own policies and their own guidelines, while taking into account their cultures and traditions. One of the challenges is not to fall into the trap of cultural relativism.

The IBC's text is based on a series of fundamental principles, with human dignity at the forefront. Can this principle really be defined?
This notion is very complex and I don't think that we'll end up with a precise definition. Human dignity can take diverse forms in different cultures. Others before us have tried to do it and we always end up with solutions that don't allow for the principle to maintain its universality.

So, what's the point then?
Human dignity is a notion that crops up in several international texts, notably in the Universal Declaration of Human Rights, and in the works of philosophers like Kant. This principle has the advantage of putting forward a vision of the human being. If we don't take human dignity into consideration, what is the use of talking about principles like autonomy or informed consent? I think that this notion constitutes a vision or an objective to which we should strive, an objective which allows us to establish a certain number of other principles that we can define more clearly.

Does such a pluralistic approach risk weakening the instrument?
We must not fall into any kind of cultural relativism, where everything is mixed up and we can do anything in the name of cultural diversity. This is why we specify in the declaration that one cannot undermine the values of justice, human dignity and human rights in the name of cultural diversity. Nothing that has been implemented should run contrary to the general and fundamental principles that we define. But one can -- in one's way of working, in one's relationship with spirituality and religion -- come up with different ways of implementing these same principles.

One of the goals of the future declaration is to prevent the stigmatization of and discrimination against individuals or a group of individuals. Could you give some recent examples of cases in which scientific progress came up against such a risk?
New risks have appeared, notably with the development of genetic science. For example, if you study the "susceptibility" of a given population to certain illnesses, there is a risk that certain sectors of the population could be stigmatized. Those who are more susceptible than others to developing a certain illness due to their genetic make-up are maybe going to see themselves denied jobs or health insurance. How can we make sure that, on one hand, epidemiological research -- which can benefit from the study of genetic data from certain populations -- moves forward, but on the other hand, that this does not lead to the stigmatization of individuals?

There is also a question about the collective dimensions of consent. If you decide to submit to a DNA test, it can reveal certain susceptibilities within your family and thus have repercussions within the family. On the other hand, everything should not be “geneticized” as the individual is made up of genetic data, but also of phenotypes, the education he or she has received and his/her environment.

The draft highlights that scientific progress should always attempt to promote the well-being of individuals and of the human species as a whole. Are there situations in which the interests of the individual and the interests of the community clash?
The great challenge in bioethics is, as a matter of fact, to try to reach equilibrium between those interests. For example: if you have a medication that costs 20,000 dollars a year per person in a public health system funded by the state, you might be forced to decide not to subsidize that medication because it is too costly and those costs could adversely affect the entire system. There are collective interests that must be counterbalanced with the interests of an individual. Bioethics allows us to inform such a choice.

On such an issue like the one you just mentioned, how could the declaration have helped inform the decision?
When we're talking about acting for the good of the individual or individuals, the declaration is not necessarily going to help because the level of social acceptability is not the same everywhere. But we hope to provide a framework that will allow us, when we're looking at these types of questions, to make the best possible decisions in the given circumstances by applying the fundamental and secondary principles of the declaration.

The text introduces certain new or emerging principles like the principle of responsibility, of accountability. What's the point of this principle?
This principle is particularly important in the current context. It touches on the whole question of the integrity of scientists and their responsibility, but also on the responsibility of individuals. We don't talk about it that often, but as individuals in a society we also have a certain degree of responsibility with respect to our health, the way we behave, feed ourselves and live, with a view to not undermining the health system for our countrymen. We often say, "My freedom stops where yours begins"-- that is a question of balance.

All of these principles remain rather general. Are you worried that the declaration could become merely a statement of good intentions? What is its true usefulness?
The declaration also recommends rather concrete measures, like the establishment of ethics committees, public debate, etc. On all of these issues, we have to engage in public debates and foster dialogue with scientists and civil society, to see how far we want to go and how it would work. All this is very concrete -- we need ethics committees, we need ethics education programs for scientists and health professionals, we need to develop genetic counseling programs… As for UNESCO, it must develop procedures to implement the declaration, as well as evaluation and monitoring procedures. All these things will breathe life into the declaration.

This declaration is aimed at establishing ethical principles that will provide a framework for recent scientific progress. Is it truly possible to create norms that will keep up with the speed of scientific evolution?
Certainly, science is developing at breakneck speed, but that is precisely why we need this declaration. In addition, the declaration is due to be reviewed later on to take scientific progress into account so that certain areas that might not be initially covered can be included in subsequent work. I don't think we should give up on moving forward just because science is moving too quickly. On the contrary, we must continue to develop useful frameworks. Once we have a good framework, we can gradually -- notably through reports and opinions -- follow the evolution and make the necessary adjustments. We cannot forget that bioethics must be based on an adequate scientific background and must not make pronouncements based on unfounded principles.

Photo © UNESCO/Michel Ravassard