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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
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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.
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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.
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Criminal responsibility: The discovery of a genetic basis for many
disorders raises the possibility of identifying genes associated
with various forms of antisocial behaviour. Criminal law is normally
based on the premise that it is necessary for the State to prove both
that accused people acted as they did and that they had the necessary
intention (mens rea) to do so. But what are the implications of
discovering that an individual's actions may be caused, or
profoundly influenced, by a pre-existing genetic
characteristic?4 The law accommodates some
genetic impairments in determining criminal responsibility.
Proved and relevant impairment may be taken into account in
sentencing, but will genetic discoveries present an even more
profound challenge for our whole notion of criminal liability? Is it
back to the drawing boards for assumptions about crime being the
product of deliberate wrong-doing?
Benefit-sharing: Much genetic research will be devoted to
identifying the genetic characteristics that confer resistance or
susceptibility to life-threatening or disabling conditions.
Should a donor of genetic material that yields data useful for the
development of drugs or therapies receive some share of the huge
profits that may result? Or should the donation be put down to
philanthropy for the benefit of humanity? Should something be paid to
the donor's village, tribe or country if a sample proves valuable? How
does the international community ensure that immediate research on
the human genome focuses on problems like combating malaria and river
blindness and not just wrinkles in the ageing rich? How can we promote
distributive justice for humanity rather than selfish use of the HGP
overwhelmingly for the illnesses of patients in the wealthy
countries?
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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.
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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.
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- The Human Genome Organisation
<http://www.hugo-international.org/hugo/
mission.html> (accessed November 2000).
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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.
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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.
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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).
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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
©MJA 2000
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