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Genetic manipulation and bioethics:

Genes for sale

by Simon Longstaff

The past few years have seen tens of thousands of ordinary Australians donate approximately AU$4 million to help fund medical research into the cause of genetic disease in children. At the same time, there has been growing public concern about a range of issues associated with the science of genetics.

Of these issues, one of the most potent has been the prospect of genetically modified foods being developed and sold within the country. While Australia has not witnessed direct action focused on the destruction of genetically modified crops, the level of disquiet about the development of such varieties has been growing with each passing year. Indeed, a hardening of community attitudes is being reflected in a broad range of initiatives by government to stiffen provisions regulating the development, use and labelling of genetically modified foods.

The differing attitudes displayed by the public towards the Jeans for Genes campaign – a fundraising appeal when everyone is invited to wear jeans to help children affected by genetic disorders – on the one hand, and the development of genetically modified foods, on the other indicate a significant discontinuity in public opinion about activities that are relevantly similar. Understanding this discontinuity is essential if one is to make sense of the complicated web of issues that constitute the field of ethics and genetics – or genethics (or bioethics) as the area is sometimes called.

Opinion about the ethical status of genetics tends to be conditioned by a couple of easily recognised factors. The first of these concerns perceptions about the motives of those working in the field. The second is to do with the seriousness of purpose that lies behind the research.

For example, a scientist working within a university laboratory to discover the cause and cure of some terrible disease is far more likely to enjoy popular support than is her colleague employed to develop a longer-lasting tomato. In the first case, people will tend to assume that the researcher is engaged in the disinterested pursuit of knowledge for its own sake. In the second, the accumulation of corporate profits is likely to be seen as the defining end of the project.

I think that we can safely assume that most people will assign a greater value to the cure of disease than they will to the extension of a tomato's life on the supermarket shelf. That is, we can easily imagine research designed to save human lives being deemed essential, while the task of improving the quality of fruit would be considered little more than an optional extra. In the same way that the issue of motive would seem to matter when people are thinking about the ethical boundaries within which researchers should move, so it is that perceptions about seriousness of purpose play an important role in defining what is thought to be a legitimate use of biotechnology.

This brings us to the crux of the matter. Factors such as motivation and seriousness of purpose are important because the science and technology of genetics offer an opportunity to control the world in ways so fundamental as to create the impression that the natural order can be set aside, at whim. Let me be quite clear, current developments in the science and technology already allow for an extraordinary array of human interventions in the world.

Beyond being a matter of perception, human beings have developed an actual capacity to manipulate the very fabric of life. Our species has the power to remodel any form of life, based on DNA. This is not meant to suggest that we have reached a point where life can be moulded to our prescription whenever we will it to be so. Our understanding of genetics and our development of the related technology are not yet that advanced. Even so, the things we can do today are, quite literally, awesome.

The concept of a natural order is a controversial idea in that it invites a debilitating kind of conservatism that approaches resignation and apathy. In this form, the concept induces people to resist any form of intervention or progress as a violation of a natural order. At its worst, the concept of a natural order has been used on countless occasions to justify the oppression of one group of humans by another – simply on the basis of class, race, gender or some other irrelevant factor that is declared to be a natural mark of distinction. Nor should we lose sight of the fact that this same idea has been used to justify the exploitation of other species and, more generally, to rationalise a host of practices that are almost universally condemned in this age.

One response to this conservative tendency is to note that human beings are part of the natural order and that their active engagement with the world is, in and of itself, quite natural. According to this view, even the most radical intervention caused, say, by genetic engineering, would be deemed natural. The danger here is that anything done by a human being can be justified as belonging to the natural order thereby opening the door to the very types of oppression that we might seek to condemn.

Given these weaknesses, why bother introducing the concept? I want to suggest that it can still do useful work if positioned somewhere in between the scylla of conservative rationalisation and the charybdis of unfettered licence. It is this middle sense of a natural order that comes into play when people respond to issues such as the creation of transgenic organisms, like those based on the introduction of the genes of a fish into a tomato or those of a human into a pig.

The response of those supporting such developments is to point out that human beings have been engaged in the selective breeding of plants and animals for centuries. This observation is bolstered by the fact that different species have been known to mate in nature. Horses and donkeys can breed to produce mules while lions and tigers have produced the occasional tigron.

It seems that this evidence, drawn from human history and nature, has a limited capacity to disturb what is, for many, a deeply ingrained reluctance to accept the idea that mixing the genetic material of plants and animals is natural. Part of the problem lies in the fact that the thought of selectively crossing a fish with a fruit, or a human with a pig, seems to shatter any reasonable expectation of what might occur if nature was left to its own devices.

It is the sense of artifice that would appear to trouble so many people as they question whether or not humanity should stand back from crossing certain ethical boundaries. We should not be surprised that the caution expressed in relation to the idea of cloning human beings owes as much to this sense of taboo as it does to any presupposition about the essential dignity of human beings.

Just a DNA sequence

Now, it could be argued that the critics of such developments are allowing a combination of ignorance and prejudice to distort their judgement. After all, it might be said that, at the level of DNA, all life is on a par where one sequence of nucleotides is pretty much the same as another. At this level, all of the differences that we consider to be significant in individual beings either disappear or become irrelevant.

Yet, it is this very argument that raises sharp ethical concerns in some quarters. What people object to is the suggestion that human beings can be reduced to a sequence of DNA. Put simply, people feel that Mozart amounted to something more than his genotype and that to reduce all things to that degree is to deny them their dignity. The reductionist approach to life is thought to fly in the face of one of the most fundamental ethical tenets developed in the past two millennia. This is the idea that humans (at least) are beings of a kind that deserve respect on their own account and for no reason other than that they are persons. The fear is that all respect will be lost if people are reduced to their genetic sequence and judged accordingly.

At a more mundane level, will we come to be defined by our individual genotype – with certain groups being declined insurance or employment opportunities unless they accept some form of modification through gene therapy? Who will hold such information? Will it belong to the individual? Will it be a non-tradable right or will certain, vulnerable people be allowed to sell their genotype to those who might have some use for it?

This takes us to another deep-seated concern about genetics. Many people make a quick and unjustified comparison between the work of scientists working in the field of genetics and those who sponsored the cause of eugenics. The point of contact is marginal – except that in considering how to prevent or cure certain diseases it is difficult to avoid using language that suggests that human beings would be better off, as a whole, if certain genetic defects could be removed from the human genome.

At one level, it is difficult to mount a reasonable argument against the proposition that no person should have to be born with Huntington's disease or cystic fibrosis. Why would anyone wish avoidable harm upon another? Surely we are obliged to prevent evils such as pain and disease. In this respect, it is worth noting that human beings have sought to limit the occurrence of such diseases for centuries – either by allowing sickly children to die or by using contraception to ensure that the defective gene is not passed on to another generation. Some practices, such as infanticide or enforced sterility, have come to be regarded as violations of basic human rights.

The underlying need that gives rise to such practices might be eliminated if appropriate tools for diagnosis and gene therapy could be developed and applied. In other words, the science of genetics offers us the possibility of ridding the world of many genetically based diseases in much the same way as we succeeded in eliminating smallpox. How could anyone object to this?

One reason for objecting might be found in the suggestion that we should change the germ cells of individuals and groups of people so that a particular disease is eliminated from all future generations and not just the individuals of a particular generation. After all, isn't the logic of health care directed towards prevention rather than cure? Those who oppose such a proposal do so on a number of grounds. First, they argue that we should apply the precautionary principle and not make fundamental changes to the human genome until we can be certain to avoid undesirable consequences. This is an argument for prudence.

Second, they argue that the permanent eradication of some diseases is the thin edge of the wedge and that it will inevitably lead to a situation in which people seek to perfect the human condition by redefining what counts as normal. For example, parents may seek only to bear children who are totally free from any abnormality – now defined as variations in height, eye colour, acuity of vision and so on.

Third, they argue that a fully human life is one lived through a range of experiences that include times of trial caused by pain, illness or other forms of loss. Some cultures and religions have traditionally seen such times as an opportunity to grow and would be resistant to the notion that it would be an unalloyed good if we could create a world in which illness, aging and death are no more.

Gene power

In the same vein, we should note that recent research in genetics has gone beyond an investigation of the way in which our genes express themselves in our physical make-up. Researchers are now exploring the genetic basis for human behaviour – speculating that there may be genes determining sexual preference, predisposition to engage in criminal acts and so on. If this line of research should prove to be fruitful, then notions of individual responsibility would probably become meaningless.

How could one hold a murderer morally culpable – let alone punish him – if his tendency to commit homicide was written in his genes? Given this, would we want to screen all embryos to ensure that they did not carry the crime genes – if such things are ever found to exist? And if they were found, what then?

The response to such objections is to offer a distinction between error correction, of a kind that would see the end of serious, preventable disease, and the alternative objective of human enhancement (which would be much closer to the practice of eugenics). Those concerned to put the science and technology to best use in the service of humanity suggest the development of sidelines that would limit treatment to the curing of diseases that were agreed to be serious and non-trivial.

Yet, this possible solution leads us to consider a further issue – who decides how the science and technology should be deployed? Will a disinterested, international body charged with the duty of promoting the public interest make such decisions or will such matters be left to the market? Will general interests or sectional interests prevail? Some fear that commercial and other considerations will see the benefits of new developments flowing exclusively to those who already belong to societies that are wealthy and powerful.

One suspects that the lion's share of research is directed to the task of solving problems in developed countries while hoping, perhaps, that a trickle-down effect will see benefits flow to the developing world in the future. Is this as it should be? How might we decide between competing demands if we do not rely on the market?

As can be seen from this brief survey of a few of the issues, genethics is not unlike the genome it relates to. Each issue is linked to another in a way that makes unravelling the questions an intricate and complex task. This brings me back to the central point of my argument. This area of science and technology generates complexity because of its capacity to affect nearly every aspect of our lives. In turn, this is what makes the ethical issues so salient and explains why the community takes such an interest in matters of motivation and purpose.

It follows that the challenge for companies is to find ways in which they can establish the level of trust needed for citizens to accept their use of such tools. Part of their success in gaining trust will depend on their ability to show an understanding of the fact that where power resides so accountability follows.

This leads to a final point – those who support developments in genetics are inclined to think that all arguments can be settled by the positive consequences of their work. The point often missed is that many hold the view that there are some things that should not be done, irrespective of the consequences. The concern is that the quest for knowledge may lead some to take one step too many. Whether these are the sentiments of modern Luddites, or not, is yet to be seen.

One last thought: will someone discover a gene for ethics, allowing the issue of genethics to be solved for all time?

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