eMJA: Kirby, The Human Genome Project in the Dock

Cracking the Code

The Human Genome Project in the Dock

Michael Kirby

From a scientific viewpoint, the Human Genome Project is actually not in the dock, nor even under reasonable suspicion of wrongdoing. Overwhelmingly, it will prove of benefit to humanity. However, from legal, ethical and other societal points of view, there are many problems already being considered by bioethicists, philosophers, religious experts, lawyers and others in dialogue with scientists.

MJA 2000; 173: 599-600

Manageable problems - More difficult problems - The big ones - Public debate - References - Authors' details
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I have just returned from meetings of the Ethics Committee of the Human Genome Organisation (HUGO) -- established by leading genome scientists in 1989 to promote international collaboration in the Human Genome Project (HGP)¹ -- in London, and of the International Bioethics Committee (IBC) of the United Nations Educational, Scientific and Cultural Organisation (UNESCO) in Quito, Ecuador. At international meetings such as these, in national bodies, in lawmaking institutions and universities, a lot of minds are identifying the chief problems of the HGP. Some of these problems are comparatively straightforward. Others are complex and fundamental.

Manageable problems

Privacy and confidentiality: Patient confidentiality has long been fundamental to the healthcare professions, having its roots in rules even older than the Hippocratic Oath. However, when a disorder is the result of a genetic characteristic, is the "patient" solely the individual, or does the entire family have rights? Are there circumstances in which family members should be entitled, by law, to override an individual's desire for privacy to obtain information relevant to genetic conditions that may also affect them? Should a patient have a right not to know the genetic determinants of likely future medical problems? How do we reconcile the rights of the individual with the fact that genetic data may be very important for others, and how do we prevent discrimination based on such data?

Third-party interests: The previous questions lead naturally to the legal rights of third parties. Should an employer have a right to require employees to submit to genetic testing to establish their likely future health status? If a blanket right is unacceptable, are there some kinds of employment for which such a right should exist by law? Are there other, less intrusive means for such employers to monitor relevant health conditions? And what of insurance companies, which traditionally have had to share largely unknown risks in sickness and life insurance with their clients? Now, would the use of newly available, near-perfect genetic tests not shift the scales unfairly to the insurers' advantage? Would it be feasible to deny the use of such tests, given that insurers can already require prospective clients to undergo other tests that may suggest genetic predispositions?

Intellectual property: One of the key issues in genetic research is the desirability of permitting patenting of genetic sequences on the basis of their future therapeutic utility.^2,3 In every country, legal rights in such research will depend on laws such as local intellectual property law, governing patents and copyrights. Such laws are usually influenced by international treaties. Opinions differ about patent protection for plant varieties and in respect of the genomes of humans and animals. One view is that the human genome is part of the common heritage of humanity -- like the open sea, outer space and the environment. Others argue that it belongs to God, and should not be subject to the profit motives of multinationals or the pretensions of passing generations. On the other hand, pharmaceutical corporations point to the costs of developing successful drugs and therapies. Such companies may not invest the large funds necessary to maximise the practical use of scientific discoveries if they are not given the advantage of temporary monopolies.

All of the above questions can ultimately be answered in the traditional way. Parliaments can set up committees or refer questions to law-reform or similar bodies. Nations can consult with each other and answers will eventually be found. But beyond these problems are others which are more vexing.

The big ones

As if the foregoing list did not present us with enough questions to cause headaches, there are two really big dilemmas presented by the advance of the HGP.

Decision-making: It is important to realise that not to do anything, legally, about the HGP is to make a decision. It is to accept that science and technology may take our societies where they will. That may be a good thing. For example, there has been a great rush to legislate and regulate reproductive cloning of the human species based on intuitive objections to the very idea. Later thoughts have suggested that we may need to give the subject more consideration before we rush into total prohibition.⁵ In the past, there were similar responses, at first, to AIH (artificial insemination husband), AID (artificial insemination donor), IVF (in-vitro fertilisation) and reproductive cloning. Yet, apart from a few legislators, most politicians avoid the complex issues of the genome. The international community has the IBC and HUGO has its ethics committee. However, effective, well-resourced national and international advisory bodies are thin on the ground. Getting agreement at a national level is hard enough given the competing perspectives. Securing international agreement is almost impossible. Yet, without international rules, in genomic regulation, as with nuclear fission and Internet regulation, national laws can never be fully effective. Faced with local legal prohibition, scientists may simply move their laboratories to a less troublesome country.

Genetic alteration: Fundamental questions are also raised by the long term effects of genetic alteration of the human species. For example, we have identified the genes that express themselves in Huntington's disease. Should the law permit, encourage or forbid the elimination of a fetus which manifests these genes? Elimination of a fetus with likely intellectual impairment is now not uncommon, but how far do we go down that track in the quest for the "perfect" child? Should we eliminate obesity, baldness, heart disease, homosexuality (if that turns out to be, at least in part, genetic)? Not to regulate these characteristics is, effectively, to permit them all. Already, in less well developed countries, crude steps are taken to eliminate one of the most common genetic conditions of all: the female sex. Should the law step in, or should we go with the flow? When it becomes possible to eliminate particular genes and transplant others, what will prevent the attempted creation of a superspecies? Or an under-species? Or an altered human species? We must be ready with our answers to these questions. It should not be assumed that sermons, political press releases and the solemn resolutions of corporate ethics committees will have the power to prevent developments deemed undesirable by most of humanity.

Public debate

Unless all of the foregoing questions are debated publicly, it is probable that legal responses, when they come, will be (as they were with reproductive human cloning) peremptory, emotional, intuitive. They may not be informed by knowledge of the best specific data. It is therefore the responsibility of the scientific community to inform their fellow citizens of exactly what is happening. It is the responsibility of politicians, lawyers and ethicists to engage in the public debate and to found their decisions or recommendations on the best available scientific information. These are not questions to be answered by the headlines of tabloids or the deadlines of politics or corporations. They require careful interdisciplinary dialogue. They should involve the community. It has begun, but it is not well funded. Its dilemmas are often very complex. It is far easier for most decision-makers to switch off.

The neglect of the ethical issues raised by the race to produce the atomic bomb in the Manhattan Project ultimately caught up with humanity, and the puzzles of regulating the Internet are now with us. However, there is no more profound puzzle than the future of the human species. This is why the questions I have asked are of such importance to Australia and the world. I offer no clear answers, but the realisation that the questions must be answered, and soon, is the beginning of wisdom.

References

The Human Genome Organisation <http://www.hugo-international.org/hugo/ mission.html> (accessed November 2000).
Chalmers DRC, Otlowski MFA, Nicol D, Skene L. Current research: project on the legal and ethical aspects of genetic research in Australia. J Law Med 1995; 3: 30-35.
Oman R. Legal and ethical issues in intellectual property protection of human genome research. In: Hansen HC, editor. International intellectual property law and policy. Yonkers, NY: Juris Publications, 2000.
Hodgson D. Guilty mind or guilty brain? Criminal responsibility in the age of neuroscience. Aust Law J 2000; 74; 661.
Stem cell research: medical progress with responsibility. A report from the Chief Medical Officer's Expert Group reviewing the potential of developments in stem cell research and cell nuclear replacement to benefit human health. Department of Health, June 2000. <http://www.doh.gov.uk/cegc/stemcellreport.pdf> (accessed November 2000).

Authors' details

High Court of Australia, Canberra, ACT.
The Hon. Michael Kirby, AC, CMG, Justice of the High Court of Australia, and member of the International Ethics Committee of UNESCO and the Ethics Committee of the Human Genome Organisation.

Reprints will not be available from the author.
Correspondence: Justice M Kirby, High Court of Australia, Parkes Place, Canberra, ACT, 2600.
kirbyjAThcourt.gov.au

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