Humanist Perspectives: issue 151: Biotechnology, Ethics and the Future

Biotechnology, Ethics & the Future
reports on the forum
from Hal Weinberg and Tom Bauslaugh

Conscience & Science, a forum on Biotechnology, Ethics and the Future, was held in April of 2004 at Simon Fraser University. The forum was co-sponsored by the University of Victoria, Science World and several commercial interests. We present two commentaries on the forum: the first by the forum’s organizer Hal Weinberg, Director of the Office of Research Ethics at Simon Fraser University and Emeritus professor of Kinesiology and Psychology; the second by Tom Bauslaugh, a psychologist from Coquitlam, BC, who represented Humanist in Canada at the forum. For more information about the forum, see www.conscienceandscience.com.

from Hal Weinberg

The fast changing world of biotechnology is affecting our society in ways that have the potential to make our lives very different in the future. There are important questions about what we want for the future, but in dealing with these our opinions are limited by existing technology and our experience with that technology. Tomorrow our opinions may change as technology itself advances.

What should we allow to happen as biotechnology progresses, and what type of controls should we place on the use of new knowledge? History tells us that there is no way to suppress, nor should we try to suppress, the development of knowledge. The issue then becomes one of how to deal with new discoveries. Can access to new knowledge be restricted? Can new knowledge be privatized? Is new knowledge similar to an invention, or to music, or a novel? And can it be patented? Is what we can learn about an individual, such as their unique genome configuration, owned by that individual, or is it owned by the person who discovered it? Is protection of the individual subservient to protection of the society, and if so when? Should we move toward robotisizing individuals, using biotechnology, in order to ensure the peace and stability of our civilization?

untitled (vira venusta) by Ingrid Mary Percy, an instructor of Visual Art at the University of Victoria (this series of drawings is exhibiting at Kelowna Art Gallery until 16 Jan 2005)

How do we go about answering these questions? I think there has to be a better approach than simply relying on religious principles to define our ethics. Relying on religion has not worked in the past 2000 years — in fact it could be argued that the conflicts and hostilities we have seen for the past 2000 years have been propagated by religious beliefs that require the compliance of everyone, and justify anything in order to ensure that compliance.

My opinion is that we should start off with only one universal ethical concept: anyone can think what they want, but they force others into thinking the same. Therefore we should not regulate the discovery of knowledge, but we should consider regulating the use of knowledge.

However, this is not as simple as it sounds, and some of the current issues in biotechnology, discussed by forum participants, highlight the complexity of this solution.

Sir John Sulston, a Nobel Laureate, talked about the current controversy surrounding the patenting of genome sequences in plants and humans. He asked a very important question: can basic information about genome configurations, discovered by scientists, for themselves or for a company, be privatized through patents? For example, if one were to discover the way in which genetic engineering could prolong life, or prevent disabilities in children, or cure Alzheimer’s disease, Multiple Sclerosis or Parkinson’s Disease, should those discoveries be privately owned? The argument for privatization is that the discoveries are the result of private research and that they are similar to discoveries of drug configurations for the treatment of diseases like HIV-Aids and other diseases. But I agree with John Sulston that fundamental knowledge cannot be privatized. Discoveries like the cure for HIV-Aids need to be — must be — available to all.

Let us take, for example, the discovery by Einstein of E=MC2 in 1905, a discovery that made a very significant change to human society, or the discovery of Watson and Crick of the DNA structure in 1953. It would be incredible to think that these discoveries could be patented so that anyone using them would have to get someone’s permission and pay a royalty. On the other hand the ways in which these discoveries can be used might be patented and regulated. If private companies do not want to do the basic research that will lead to these discoveries then the public system should ensure there is sufficient funding in universities and other research institutions.

Another participant, Maureen McTeer, spoke eloquently about the impact of current policy in Canada and other countries with respect to the use of patents to establish ownership of discoveries. She pointed out that patents are supposed to be tools to protect the ownership of inventions. The Canadian Patent Act defines an ‘invention’ as any new and useful art, process, machine or composition of matter, or any new (not previously disclosed or known to the public) and useful improvement in any art, process, machine, manufacture or composition of matter. The act specifically excludes the discovery of a new plant or animal found in the wild, new minerals discovered in the earth, computer programs, speculations, methods of medical treatment for humans or animals, methods of using medicine or similar substances to diagnose, prevent or cure ailments in animals or humans, and more generally anything with a medical benefit, and of particular importance, new scientific principles. Ms McTeer pointed out that the first genes were patented in the late 1970s, those of insulin and the growth hormone. Others followed, and micro-organisms containing human insulin or growth hormone genes were also patented. Almost unnoticed was that the line of non-patentability of living organisms had been crossed. She pointed out that later, in 1980, the US Supreme Court made the practice of patenting life forms legal by deciding that a genetically engineered unicellular organism that ‘ate’ oil spills was a patentable manufacture or composition of matter. However, at this point the Canadian government refused to follow the lead of the Americans in the patenting of human life forms. Then along came the Harvard mouse case.

The Harvard Mouse case arose from a patent application filed June 21, 1985 for a transgenic mouse whose genome was genetically altered by a cancer-promoting gene. The altered mice were more susceptible to carcinogens and could be used for carcinogenic studies. The claim for patent read: “A transgenic non-human mammal whose germ cells and somatic cells contain an activated oncogene sequence introduced into said mammal, or an ancestor of said mammal, at an embryonic stage.” The claims to the mouse were rejected by the Commissioner of Patents and Patent Appeal Board as being outside of the definition of an invention. This decision was upheld by the Federal Court Trial Division, but reversed on appeal. This went to the Supreme Court of Canada on June 14, 2001. The Court decided by majority that the sole question before them was whether the oncogenic mouse was a ‘manufacture’ or ‘composition of matter,’ so as to fall within the definition of an invention under Section 2 of the Canadian Patent Act. The Court decided that it did not. Justice Bastarache concluded that the patenting of higher life forms raises serious practical, ethical and environmental concerns, which are highly complex and beyond the scope of the judiciary — meaning that the issue needs to be resolved by Parliament.

untitled (cysplata) by Ingrid Mary Percy

This is an interesting example of the Supreme Court coming to the conclusion that it was not their role to establish laws, but to determine when proposals are within laws that are established by Parliament. It is clear that patent legislation should be reviewed periodically to make it consistent with the way in which new discoveries can affect the basic substance and character of our society.

David Suzuki discussed the question: Biotechnology: Panacea or Hype? Dr Suzuki started with a personal story. His whole family was Canadian born, but in the initial stages of World War II he and his family were incarcerated in an internment camp, and their home and property were confiscated, simply because they had Japanese genes. Dr Suzuki described how genetic characterizations of individuals were at the heart of the so-called science of eugenics, and in many cases were the justification for horrible periods in the history of our species. He wondered if biotechnology is now on the precipice of a new period in which significant mistakes will be made in understanding the social and ethical implications of new biotechnologies, with resulting impact on the very nature and characterization of our species. An example is the ability to make combinations of DNA molecules from diverse species and to test those molecules in living cells — called recombinant DNA. He went on to say:

Today products of biotechnology are being rammed into our food, onto our fields and into our medicines, without any public participation in discussions and with the complicity, indeed, the active support and funding of governments. But there are profound health, ecological and economic ramifications of this activity. At the heart of biotechnology is the ability to manipulate the very blueprint of life, removing and inserting segments into diverse species for specified ends. While plant and animal breeding over the past ten millennia have built the agriculture we depend on, biotechnology takes us far beyond the crude techniques of breed and select. It behooves us therefore to examine the underpinnings of the claims, potential and limits of this young field.

Science is a process of discovery — and to a large extent it is always in the business of trying to prove and disprove hypotheses and theories. This fundamentally means that at any one time there is uncertainty about the implications and consequences of current discoveries. When the possible implications could have tremendous and very long term and long-reaching consequences it is important to really know what is going to happen. One example he used was DDT, a compound that kills insects, which was synthesized by Paul Mueller in the 1930s. He got the Nobel Prize for that discovery. Suzuki pointed out that:

The power of chemistry to control a scourge that had plagued humankind since the beginning of time was trumpeted widely. At the time Mueller made his discovery, geneticists knew enough to have suggested that using an insecticide would simply select resistant mutants that would eventually replace the sensitive strains and thereby set farmers onto a treadmill of requiring an endless string of different pesticides. Ecologists of that time could have suggested that of all animals in the world, insects are the most numerous and diverse, and play critical ecological roles like pollination, predation and feeding other species. Perhaps one or two insect species per thousand species are pests to human beings. Using a broad spectrum insecticide to get at the one or two species that are a nuisance to humans seems analogous to killing everyone in a city to control crime.

Suzuki was saying that the very fact that biotechnology is in the process of discovery means that the consequences of discovery are unpredictable. We have to proceed with caution and understanding and not be pushed ahead by commercial steamrollers that have only profit in mind. He pointed out that many of the programs of research at universities — the primary place of discoveries in biotechnology — are funded by commercial enterprise, and that research in universities has become subservient to the business of making money. The consequences of this could be disastrous for our species — for all species — and we must proceed with extreme caution.

This concept was emphasized by almost all contributors to the forum. Arthur Kroker asked: What would actually be the ‘Genetic Ideal?’ Would it be no viruses, no germs and no defects? And how would one decide now on what are the defects of the species? What would happen to the species if we did not die, and are we as a society prepared for that change? Kroker argued that in fact we are becoming the first species to engineer the end of their own species, which is a complete contradiction to the whole concept of evolution.

In all of these issues we are, of course, looking at them from the perspective of today. If changes are made, if eugenics reigns, then the objects of those changes, ourselves, would be asking the question about what was a good change or a bad change from a different perspective, the perspective of the future. Since in such a future we may have been modified to accept the changes, we might not be inclined to ask whether those changes are good or bad. How can we know what the consequences will be of our ability to manipulate the very character of our species — or for that matter any species?

from Tom Bauslaugh

The panel for the forum was distinguished and knowledgeable. Unfortunately it was rather poorly attended, with the hall about half full for the first day. The second day had a student debate on the ethics of biochemical control of behaviour. Interestingly, I found the questions raised by those students and others attending the forum to be generally clear and to the point, while those from the professionals attending were often rambling statements peripherally related to the topic. However, I found the conference interesting and informative overall, with four of the speakers sticking particularly in my mind.

Sir John Suston argued for the free availability of information and a rebalancing of the complimentary relationship between for-profit research and non-profit public interest. His primary example was his work on the Human Genome Project. Corporations had sought to patent human genes which would restrict public research in that area. Companies holding a patent could restrict the study of a gene, restrict the ability for researchers to publish their results, and would hold the rights to any product of study of that gene. Through the work of public scientists, governments and other parties, the human genome became public domain and be available to all people. Corporations have since been trying to do ‘wraparound’ patents, which seek to patent all possible uses of the gene, rather than patent the gene itself. This has the potential to give corporations a virtual lock on the possible use of a gene.

Sir John also discussed the conflict between the corporate agenda of maximizing profits and the public good. He offered the example that 75% of drugs approved by the FDA have no benefit over existing drugs, but would likely be profitable for the company. Only 1% of new drugs are aimed at the ‘neglected diseases’ such as malaria and tuberculosis which cause the most death and suffering in the world. He said that 90% of research and development goes towards diseases that cause 10% of the harm. The top selling prescription drugs are for ‘wealthy diseases’ such as depression, cholesterol and allergies.

David Suzuki gave an excellent and personal talk, the central theme of which was a cautious use of science and technology. He spoke of his own life and the effect of the Japanese internment during the Second World War. At that time he and his family were given the choice of moving into Eastern Canada or being deported to Japan, a country that he had never been to. Part of the reason that governments found this acceptable was rooted in the science of eugenics. Without proper understanding and humility, the application of this science had led to real human suffering. Ironically, after becoming a geneticist he discovered the origin of modern genetics lay in the eugenics movement.

Dr Suzuki brought in other examples of disastrous early uses of technology. The concept of bioamplification — small concentrations of chemical becoming concentrated high up in the food chain — was unknown when DDT was first used. Much damage was done to the environment before a better understanding of its effects was gained. CFCs seemed to be another wonderful and useful chemical until the effect on the ozone layer was discovered. Again, damage was done because a new technology was used before a more sophisticated understanding was gained about long ranging effects. These examples culminated in a discussion of genetically modified foods. Dr Suzuki argued that we do not know what the results of releasing genetically modified foods into the environment will be and urged caution until a more mature understanding of the technology can be gained.

Arthur Krokur presented an interesting, thought-provoking, and sometimes hard to follow discussion of humans planning their own extinction through the use of genetic modification. To the extent that we can now modify genes, and will in the future gain more and more control over our own biology, what will become of the idea of a human species? It made me question the future of the concept of species altogether, thinking of a species as simply a particular collection of genes. Scientists can now splice genes from one species into another to gain some advantage or another. With a greater understanding of genetics who knows what type of cosmetic gene manipulation might be available? Science fiction scenarios of designer babies are one possible direction, but why stop there? Why not chimeric combinations of humans and animals to suit specific needs — super soldiers or epsilon elevator attendants? Maybe we can imbue animals with human intelligence. For a society just come to terms with inter-racial marriages and struggling with same-sex marriages, I shudder to think of the impact of the first inter-species marriage. What happens to the idea of human rights when the line between humans and other species becomes blurred?

David Bollier spoke in a webcast from New York about the ‘commons,’ the shared ownership of a community. Information in the public domain is part of the ‘commons’ as are such things as government parks and buildings, which are administered by the government but owned by the people. He spoke of corporations raiding the commons, taking knowledge from the commons and trying to patent or control it in their own interests. Public scientists have a reciprocal relationship with the commons, benefiting from other published works and sharing their own. Corporations do not have this relationship, building on the published works of others, then taking proprietary ownership of their own research.

If the conference had a central theme it was the conflict between the corporate and public agenda. Sir John Suston talked about corporations seeking to patent and control technology, directing it toward corporate profit. He said that public research leaves scientific knowledge available for others to build upon, and also that public money is more likely to be directed towards the public good. David Suzuki talked about corporations rushing technology to market to the possible detriment of us all, and argued for a mature understanding of technology before it is pushed into the marketplace. David Bollier argued that we benefit from knowledge residing in the commons, rather than taken and controlled by corporate interest.

But I felt that the conference largely focused on particular ethical goals, rather than the process by which ethical decisions might be made. For instance, Sir John talked about the goal of keeping the human genome in the public domain and preventing private control of human genes. And he provided compelling reasons why this would be of benefit to all of us. However, what mechanism guides our decision making about what areas of research scientists should pursue, how this should be used and distributed, and who should benefit to what degree?

The conference had a tone that science should be used to help humanity, for example by fighting deadly diseases. But in truth science is used like anything else, very often by the rich to make themselves richer. Private money is spent on topics of interest to private money, and discoveries are then used accordingly. Corporations which develop drugs do it to create a profit for their shareholders, for the same reason that cars are manufactured. AIDS drugs are developed for Western countries and are mainly distributed there. Drugs are developed by corporations because there is a market (or a potential market) for them, not because there is a need. Certainly there is a need for effective treatments for malaria, but there is not a strong market for it. There may be a trickle down effect, but this rarely seems to be the primary goal. This is not to say that corporate behaviour is unethical, just that the system is such that profit is the primary motive of any corporation. Public money may be able to fulfil some of the gap between market and need, but western governments and scientists are still likely to be more focused on local concerns of cancer and heart disease than of global issues of malaria and starvation. In addition (as pointed out by one of the speakers) public money for research is drying up and universities are being forced to turn to private money for funding, pushing public research towards corporate interests.

In some sense the conference provided a bleak vision of corporations slowly chipping away at the commons, with an occasional victory for the people quickly outflanked by the corporation. The human genome is now public domain, but corporations now work to create ‘wraparound’ patents which effectively achieve the same end. Despite protests, genetically modified foods have now entered our food chain and our environment, with unforeseeable effect. Senator William Keon and Maureen McTeer presented governmental and legal avenues for constraints and control of science and technology. But these seemed slow and unwieldy, lacking the speed and insight needed to keep pace with rapid changes in science. For example, Senator Keon spoke of Bill C6, the Assisted Human Reproduction Act, passed in Feb 2004. This is apparently the first legislation passed on the topic after a Royal Commission was set up in 1989 by Prime Minister Brian Mulroney. To say that reproductive technology has advanced in that time is somewhat of an understatement. Animal cloning, for example, has gone from science fiction to headline news to routine in that time.

As a forum run by university scientists it was perhaps inevitable that it would focus on unencumbered research, sharing and open access to all who are interested. This is the university tradition of sharing research and increasing knowledge for all — a laudable and noble tradition which has served society well. However, the ownership of biotechnology is likely not the primary ethical issue of concern to the general public. The obvious question which seemed to be missing was whether there are areas of research that should not be pursued or applied, and how this could possibly be enforced or controlled. Research into weapons, human embryonic stem cells, human cloning and genetically modified organisms are some examples where a discussion of restrictions or limits might be warranted. But there was little discussion on what process might help scientists navigate these issues and balance human rights, scientific curiosity, public good and corporate profits.

Public money for research and education is one direction which could help keep scientific knowledge in the public domain and help emphasize the benefit for the general public. Others, however, would argue that the profit motivation inherent in the patent system encourages innovation which would otherwise be impossible. At any rate, in my experience ethics and conscience in general are not a strong area of focus in the university system. When I was in university, if one wanted to do an experiment, then the procedure had to pass through the ‘ethics committee’ which would assess whether the research could proceed as written. My opinion at that time was that this process was not a helpful filter but a potential barrier to doing the research that I wanted in the way that I wanted. There was no course in ethics, and as far as I can remember the extent of our ethical training was to get informed consent. And this was an education in Psychology, where the rights and responsibilities to human subjects are likely emphasized much more than in the hard sciences. In my mind, the public university system has certainly not emphasized the ethical use of science, other than to allow openness and intellectual freedom. Certainly the university system encourages ethical behaviour through its system of refereed publishing of research, but such a system cannot be the final word on the search for conscience in science.

Technology is certainly entering a period where it will push our understanding of, to quote Douglas Adams, ‘Life, the Universe, and Everything.’ There seems to be few guiding principles that scientists can look to for a framework to work from. Open access to the benefits of science seemed to be one principle backed by the speakers, and caution another. But when people think of conscience in science they are more likely to want to discuss limits, boundaries, guidelines, religion, morality and human rights, instead of ownership and patents.

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