Having read Sir Johns excellent book, Ive decided to take his three main questions, which are: what do we not yet know? where will this lead? and what are the foreseeable problems? and switch them around slightly.
I think the question, what do we not yet know? could be phrased slightly differently. Why do we have to understand?
The question, where will this lead? I will switch around to where has it led?
And under the question, what are the foreseeable problems? I d like to start a discussion, which will probably culminate in Sundays session on values, on foreseeable frameworks and principles.
Why do we have to understand?
Its quite evident from the three presentations that in this era of life sciences, where we are going across the genomes, plants, animal, human, that two decades from now things will [not] be so clear as to what is animal, vegetable or mineral.
So, while we are in co-evolution, co-adaptation and, in a way looking in homologies between the species;
While we are making corn that is resistant and doesnt need pesticides, but might, according to some, be killing off the monarch butterflies;
While we are using genetic engineering techniques to produce pigs whose kidneys, or other organs, will be compatible with humans;
While we are proposing somatic cell therapy research experiments and, yet, do not know if that same therapy will cross over to the germ line; and,
While we are building informatic systems that allow us to take genetic information and combine it with the most highly-sophisticated computerized techniques for banking, both cell banking and information banking because they are both the same thing why do we need to understand?
I think we need to understand and use the principles that we have available to us right now. These principles come from the different genomes, from the different areas of life and life sciences; for example the precautionary principle from environmental sciences, can we use it across the genomes?
[And what of] the stewardship principle coming from the biodiversity arena, can we apply that to humans?
The mistakes we made with plants and animals that now have led us to realize we need reservoirs, conservation parks and germ plasma banks for biological materials. Is that where were going with humans? Are humans just another form of living matter? Are we also a resource to be exploited and mined?
We also need a different interpretation of the ethical principles were using currently in medicine. They may not be sufficient to answer the larger questions of the life sciences, of the new bio-technologies and bio-ethics.
To understand whether we should be framing new principles, new frameworks, we need to examine where the life sciences have led.
Looking at it from public perceptions, that is, how the public, the citizens, the taxpayers understand it; how they perceive it.
The most common associations that we hear in the media is about [how] we are playing God, or fooling with nature.
Its very reductionist to think that people are the sum total of their genes and that if we do germ line therapy, or if we do stem cell research, we are somehow playing God, as though people are their genes.
We are much more than our genes. And we are not fixed, either. In fact, not only do we all have mutations, but we are also mutating.
The public says: youre transgressing the lines between the species, the order in which things were made; the natural order; again, as though nature were static; as though there was a hierarchy in the Biblical sense of man capital M over the animals and the plants, rather than in co-adaptation and co-evolution.
We have seen accusations of commercialization, an issue which I wont get into but [which] you might want to discuss during the question period. And this [is] because governments have moved away from funding of science due to economic restraints and the market has taken over.
I think the major expression of hype and hope, of polemic and phobia that we see, however, is what is often called the dread factor. The fact that hypothetical risk is perceived by the public as real risk and, thus, reacted to by politicians as being real risk.
This has created an atmosphere of zero tolerance which, again, can in a sense be harmful to the future of humanity. And thats why talk about "stopping" scientific progress and so on undermines our own responsibility to deal with the issues at hand.
The most serious public perception, I think and this is not hypothetical risk, this is real is a lack of trust. And this is an item Ill come back to in my conclusion. A lack of trust in experts, including probably soon, bioethicists, scientists and governments.
Enough for why we have to understand.
Where has it led?
Id like to spend a few minutes on what are possible frameworks and principles.
First of all, moving away from simplistic reductionist types of theories.
If we are now in the life sciences, in the bio-technologies, crossing all the species, then we need, perhaps, to borrow from physics the whole notion of complex systems and appreciate the epigenetic, if you like, dynamic and evolving nature, even of the ethical issues.
In other words, we have to build ethical frameworks, ethical discussions that are equally epigenetic and complex.
By complex, I dont mean confusing, because if you follow physics, common complex systems often naturally lead to simple rules. In fact, its in their very nature.
We need to get away from binary, isometric approaches; the approach that sets up the private ordering approach against the public ordering approach. Under the private ordering approach you would start with research, and if you feel uneasy, you say, well, maybe we should have a committee look at the ethical issues.
Then, as a profession maybe we should have our national association adopt some sort of code of conduct, or ethical principles, or whatever.
And then when the public and governments still feel a bit uneasy, in spite of professional self-regulation, maybe maybe a national commission, or provincial commission is set up.
And finally, a law, if necessary. And then a decade later, we suddenly end up on the international scene saying, wow, everybodys got the same problem, but with different laws. What are we going to do now?
This the private ordering route going from the science to the normative international framework was followed for organ transplants and reproductive technologies.
And it is a route that probably that should not be followed in and of and by itself.
The other approach, called the public ordering approach, is the one that was attempted by UNESCO in the Universal Declaration on the Human Genome and Human Rights.
This involves collaboration Internationally, on a global scene, and formulating principles that, at a certain minimum level of normativity, can be shared. And then allow countries to do their individual, maybe laws, maybe just codes of ethics, maybe nothing at all and so on. But, at least share internationally at an early stage of a new development and then inspire countries to follow in their own cultural interpretations these principles.
I used to think it was one or the other.
Im now convinced its both, because under an epigenetic approach you would have to have constant interaction between the working out of international norms and the working through of national approaches.
So, what then can be the new principles, if they are needed, or new frameworks to guide this epigenetic approach? What are the avenues open to us?
First, Ill look at approaches, then principles.
The approaches emerging over the last 20 years of government reaction, or public reaction, if you like, to the new technologies are the following:
Lets look at these one by one.
Theres the human rights constitutional approach based on charters and human rights codes. Weve got constitutions that contain the principles of privacy, of liberty, of security of the person, of the right to life and of non-discrimination. Why do we need more? Lets simply interpret these tools, give them some robustness and use them to frame how fast, or not, we want these technologies to be applied or used, if ever.
Theres a difficulty with this since you end up having a technology thats already in society, which you spend 10 years dragging issues up to the Supreme Court of Canada and by that time its pretty well entrenched and, perhaps, too late for normative frameworks.
The self-regulatory approach [is] the one most preferred: get professional groups together, have them decide, self-regulate, adopt their codes of conduct and so on.
In a way its flexible, its dynamic. You can change it, as the science changes. You can even be prospective, if youre imaginative and creative enough and think ahead of time about where you dont want to go or, perhaps shouldnt go, and influence your profession that way and safeguard the rights of research participants and patients.
However, its seen as self-serving. It often administers technologies, rather than being an expression of values.
Then, theres the favourite one: the one that you get in a three-second sound bite; "we need a law against it." Thats the third one.
This is a good approach, where a country shares, at least at a majority level, a certain homogeneity of values. Thus, a technique can be prohibited since it can be seen as reprehensible.
Or, you take the U.K. legislative approach: we accept it, but we want to limit it and frame it, but not necessarily prohibit it.
Everyone feels much better. Politicians go home and get away from those awful sticky subjects.
But the problem with laws is how theyre made and how theyre used. Theyre often written with scientific definitions that make absolutely no sense. You have definitions of cloning and, then, oh, Dollys born; great, we have a law. Then, you find out youve defined cloning in a way that describes a technique that wasnt used.
Moreover, you may end up with laws that contradict each other between countries and then, again, international agreement is impossible.
Indeed, you end with countries who, when they do get up to UNESCO or United Nations or whatever, cant move, cant talk, cant come to consensus, cant compromise, because theyre stuck with their laws. And so you cant get international agreement and you have people going to different countries, depending on what their laws are in order to get what they want.
And finally you can have the laissez-faire approach.
This is do nothing. The market will weed out the bad guys through lawsuits and scandals, followed, perhaps, by government intervention. Supposedly, the market will bring quality assurance and, thus protection, to human subjects and to patients.
So, those are the four approaches.
In conclusion, are there any new principles we dont want to invent principles just to have new words that speak to the new kinds of relationships created by biotechnologies?
Ill give you five I think would be interesting to start a discussion..
The first is that of reciprocity, that is between researchers and participants, between persons and experts on animals, the environment and plants and so on., [an] exchange of information, having a more consensual relationship, rather than experts. Reciprocity, exchange, more openness, more transparency.
The second is mutuality. A notion of obligation to others; of civic responsibility. Now, how we reignite this having separated church and state quite a while ago will be one of the biggest challenges. We no longer have a sense of civic responsibility or mutuality; its autonomy that reins at all costs.
The third is solidarity; not the Marxist stuff we did in the 60s, but solidarity by the state in return for citizen participation. In return for citizen support of basic science and applied research, [the state] protects citizens from untoward socio-economic situations, such as discrimination or intrusions on privacy. In short,
there are mechanisms in place to protect citizens against the untoward effects.
Benefit sharing, or equity, I should say, is the fourth principle. Equity, which means benefit sharing. Weve seen it with the Biodiversity Convention. Why not with humans?
If Eastern Quebec, for instance, is so genetically interesting because weve got homogenous populations, weve traced them over time, weve got a great demographic data bank; or if Iceland, Newfoundland, Finland or the Amish or the Hutterites are good material for study. How do we give back to those populations. Yet, how to not commodify humans and their genetic material and, yet, give something back to populations?
And finally universality.
Sir John mentioned it. Yet, we know it. Its not hype, its true. Progress is global, technology is international. We have to think as international citizens.
Everyone always ends their speeches saying, well, these are questions for ethicists. Id like to put the ball back in your court and quote from the July 23 issue of Science, where there was an editorial by Frederico Mayor, the Director-General of UNESCO, who was at the world conference on science last month in Budapest.
He argued for greater interaction among all stakeholders and for a truly global perspective in research. I quote:
"This greater interaction requires improved communication of science to the public and higher levels of scientific literacy in order for people to influence how science and technology affect their lives.
"Science has to meet the real needs of real people; respecting individual rights and empowering communities to win public and political support.
"Scientists must exercise an active ethical and social commitment to earn trust. This is the new social contract of science."