Ethical, social and legal implications of the human genome project

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The public awareness and curiosity about the ‘New Genetics’ or Genomics have been galvanised by the debates emanating from the scientific achievements of the Human Genome Project (HGP). The scientific aspirations of the HGP include complete mapping of the human genetic code and application of this knowledge to find cures for thousands of genetically transmitted diseases. It is the largest research project ever undertaken to understand how life works at the molecular level. It has been suggested that humanity is now entering a new scientific frontier, which would for the first time open the so-called ‘book of life’.

Besides the anticipated advances in biomedical sciences the increased availability of genetic information will have many ethical, social, economic and legal implications which will profoundly affect human societies. Some of the ethical issues raised by increased genetic knowledge relate to the proper and fair use of genetic information by insurers, employers, courts, schools, adoption agencies, law enforcement bodies and the military. It raises question about the confidentiality and privacy of genetic information: who should have access to individual genetic information, who owns it and how it will be used? Genetic information will have important consequences for individual identity and selfhood, as well as society’s perception of the individual. It also raises ethical and moral issues in the clinical areas of reproductive behaviour, genetic therapy and genetic enhancement. The economic implications relate to the issues of commercialisation of genetic knowledge and products. All of these issues have legal implications.

A joint Academy-Flinders University sponsored workshop was organised to explore and debate some of the ethical, social and legal issues and held 1-2 December 2000 at Flinders University. Fifteen papers were presented by 20 participants from Australia and overseas.

The opening session was devoted to the HGP and the future of medicine. Professor Grant Sutherland (Women’s and Children’s Hospital, Adelaide) gave an overview in his paper, ‘The Human Genome Project – scientific achievements and impact on the future of medicines’. He argued that HGP is still in its early phases and as it proceeds the data on genes for single-gene diseases will increasingly be used for genetic counselling, the prevention of disease through prenatal diagnosis and genetic based treatments. Eventually the common disease susceptibility genes will allow predictive testing long before the onset of such disease. This could revolutionise medicine from its current approach of treating disease, to preventing it. The paper argued that the knowledge of the genome status of individuals would give rise to many issues that primarily revolve around the potential for discrimination. The potential to greatly increase life expectancy has many implications for population size and structure and how the community will choose to deal with them.

In their papers Associate Professor Evan Willis (Latrobe University) and Dr Maria Zadoroznyj (Flinders University) addressed the impact of the New Genetics for public health and health inequalities. After reviewing the intended and unintended impact of the HGP on public health, Willis argued that the new challenge was to harness the benefits of advances in genetic understanding of disease and to help ensure that these outweigh the apparent drawbacks. A key argument was not that amelioration in the individual manifestation of genetic disease should not be pursued but that balancing resource allocation between individual and population health is a difficult task when the whole politico-economic contest in which these advances are taking place, make investment in public health issues problematic. The danger is that individual health ends are being sought at the expense of the sort of population health benefits that have always been the concern of public health.

Zadoroznyj’s paper argued that despite the promise of the new genetics for better health and longevity, there is little reason to believe that these benefits will be equitably distributed in the population. The paper stressed that economic, social, and health delivery systems needed to be reshaped to ameliorate the cause of existing differentials in health status and longevity. She envisaged the need for involving the public in policies and decisions about the allocation of resources for public health to ensure that new types of inequality will not emerge which would have significant social and ethical implications.

Papers by Dr Neville Hicks (University of Adelaide) and Dr Christopher Newell (University of Tasmania) addressed the issues related to the impact of HGP for human identity. Hicks argued that much of the debate about the HGP was fuelled by ethical concerns, mostly expressed in the dominant deontological and utilitarian languages of bioethics, each of which might be regarded as inadequate in articulating a conception of personhood.

Newell’s paper explored the impact of the new genetics on people with disabilities. It argued that the so-called new genetics is driven by dominant discourses, which perpetuate the oppression of those we identify as having a disability. Substantial policy arrangements are necessary if we are to ensure that people with disability and disease will achieve full participation in social life, rather than further stigmatised and marginalised in the brave new world.

The papers by Professor Nick Martin (Queensland Institute of Medical Research) and Dr Catherine Waldby (University of New South Wales) addressed the question of the meaning of being human. In his paper ‘A man is the sum total of his DNA sequences’, Martin argued that this was a restatement of old questions about free will vs determinism, nature vs nurture, and the autonomy of the individual. Although for many variables human reaction range may be greatly narrowed by the options his genes give him, the human being is not simply the sum of his DNA sequences. The paper concluded that triumphant genetic determinism might be as misplaced as Boasian environmentalism was 70 years ago.

Waldby’s paper addressed one of the paradoxes of molecular genetics. On the one hand particular configurations of genetic information are taken to produce particular species. The scientific goal of the HGP is predicated on this as it seeks to exhaustively specify the long list of nucleotide sequences claimed to be presenting the prospect of a perfectible and specifiable human genetic content. On the other hand, in molecular biology, particular gene sequences and functions are shared among numerous animals and plants, and the genomes of several organisms were used to help assemble the human genome, precisely because of the indifference of genetic code to species distinction. The HGP involves multiple translations between human genetic information and cybernetic information, opening up ever more complex forms of interpretation between flesh and data, human and computer.

The papers by Dr David Turner and Professor Riaz Hassan (both from Flinders University) examined the scientific, ethical and social challenges in the postgenomic society. Turner argued that postgenomic society will not involve a reductionist human existence, but all individuals will have access to individually determined, probabilistic lifetime risks for most human disorders. Refinement of risk disorder will place burdens on individuals and create moral obligations, and societies will need to determine what predictive genetic information may be blamelessly private and when information must be disclosed. With intervention to ameliorate the onset of predicted disorders there is likely to be an accelerated increase in longevity with potentially intolerable burdens for healthcare. The paper suggested that maximising the potential benefits of predictive genetic testing without causing self-sacrifice or producing a genetic underclass would become an urgent public interest issue requiring appropriate policy development.

Hassan’s paper focused on the social implications of ‘manufactured’ longevity. The indications are that, as result of the knowledge gained from the HGP, there will be a significant increase in life expectancy in rich industrialised countries like Australia. For many, life will not only be longer but also healthier and perhaps more fulfilling and rewarding. It will also be an era of disruptive social, political and cultural change. The uneven distribution of longevity may produce new environmental stresses and global political and social conflicts. The success in arresting or slowing down senescence will force us to redefine who we are as individuals and as collectivities. The age-segregated life-course would need to be changed to a more flexible age-integrated life course that is more conducive to lifelong education, work and leisure.

Three papers were presented in the session on The Ethics and Etiquettes of Managing Genetic Information. Dr Alan Petersen ( Murdoch University) focused on counselling the genetically ‘at-risk’. He argued that the new genetic knowledge will radically change the practices of medical treatment and illness prevention. An examination of the history and context of a non-directive approach to genetic counselling and its underlying assumptions and principles, suggested an urgent need to evaluate the aims and regulatory implications of genetic counselling.

Professor Robert Goldney’s (University of Adelaide) paper examined the issue of communicating genetic information to patients by medical practitioners, using case studies. He argued that increasingly clinicians will have to address the importance of genetic contributions to illness and behaviour. Furthermore, individual patients will have access to an unprecedented level of information, some of it not subject to peer review, about their conditions. The paper explored some of the ethical and clinical implications of these issues. Mr. David Keays (University of Melbourne) examined the issues of genetic testing from the legal perspective. Genetic testing is now becoming an important part of modern medicines and can provide at-risk individuals with the opportunity to initiate prophylactic strategies. However this technology has also given rise to genetic discrimination especially by the insurance companies.

In her paper ‘Turning the “Book of life” into Stock Offering’, Professor Barbara Katz Rothman (City University of New York) explored the issues related to the ownership and regulation of new genetic knowledge. She argued that now that the ‘book of life’, the human genome, has been mapped, the limits of that accomplishment- what it will and what it won’t mean for us human sharers of this genome- are starting to become clear. The promises of long lives, individually tailored medicines, unlocking the secrets of cancers and other serious diseases are being accompanied by the announcements of patents and profits from the human genome. Patenting not only changes the way science can be used or controlled but it also forces science to redefine itself as ‘inventor’ and creator of a world of investments. We are thus confronted with the hegemonic power of the markets, leading us to create a world in which well-educated and otherwise reasonable people can argue that if there is no profit to be made then there is no incentive to cure cancer or end human suffering. If this is the best we can do with the ‘book of life’, she argued, then we are heading towards a state of moral bankruptcy.

In the final session Associate Professor Colin Thomson (University of Wollongong) argued that the knowledge derived from the HGP is likely to lead to tension between moral, social and legal equality, and biological inequality and difference. A politically and socially inclusive conception of law is needed to address the questions that arise from this tension, such as: how can we assimilate the flood of information about biological difference without undermining a commitment to political and legal equality? and what principles should guide public policy and individual choice concerning the use of genetic interventions in a post-HGP society?

In his paper on ‘Designer Babies’ Associate Professor Ian Hunt (Flinders University) examined the ethical limits of the use of genetic engineering to produce offspring with desired characteristics. Biological complexity will always set a significant limit on the range of genetic engineering that we can undertake with acceptable risks, and modifying genetic material may harm not only babies that develop from them but afflict indefinitely many subsequent generations. Since parents do not own their children, and can only vicariously suffer the consequences of what they do to them, parents are not entitled to engineer their children for their own purposes in ways that those children may well come to reject.

Over the two days the Workshop provided an intellectually stimulating venue for exploring ethical, social and legal implications of the Human Genome Project. The workshop sessions were structured to provide time for vigorous and informed discussion of the papers. The participants felt that the Workshop provided a valuable opportunity for scientists and social scientists to debate some of the critical scientific, ethical, social and legal issues arising from the Human Genome Project and in this respect it fulfilled its stated objectives. The work is now in progress to prepare the Workshop papers for publication.

Riaz Hassan is Professor of Sociology at the Flinders University of South Australia.

This Report also appears in Dialogue Vol.20 No.2, 2001.

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