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Ethics and Genetic Discrimination
The Honourable Justice Michael Kirby AC CMG of the High Court of Australia
The Queensland Museum Theatre
24 June 2001
Justice
Kirby was well qualified to present this topic since he has been
President of the International Commission of Jurists and holds Memberships
of both the Ethics Committee of the Human Genome Organisation and of the
International Bioethics Committee of UNESCO.
“
The Human Genome Project involves the full mapping of the molecular structure
of our DNA, an enormous task. It holds promise of major health benefits
for humanity. But the project presents countless puzzling ethical and legal
controversies. Some of these require us to confront awkward choices. What
is a “defective” gene? Many people might regard a gene associated
with Down’s Syndrome as such and conclude that an embryo manifesting
that gene should be eliminated if the mother or both parents so wish. But
if this can be done where do we draw the line? What about deafness, or
dwarfism, or baldness? Or if a “gay gene” is discovered, what
of homosexuality? These are but some of the puzzles that genome research
presents to society.” Justice Kirby.
He suggested some answers and stimulated lively discussion. The meeting
was held jointly with the Royal Society of Queensland and was very well
attended.
Ethics and Genetic Discrimination
The Hon Justice Michael Kirby AC CMG
LIVING WITH THE GENOME
I am a member of UNESCO's International Bioethics Committee (IBC). High
on the agenda of the Committee is consideration of the ethical implications
of the Human Genome Project. One aspect of those ethical implications concerns
the way genomic science will affect our attitudes and actions in relation
to people who manifest genetic variation, causing what are sometimes described
as disabilities. This was an issue high on the agenda of the IBC when it
last met in Quito, Ecuador, in November 2000. I propose to address the
issue of ethics and genetic discrimination against the background of some
of the subjects raised in Quito and elsewhere since.
Most of the IBC sessions in Quito were concerned with subjects relevant
to the implications for morality, law and society of the advances in genetic
science. The Quito meeting was the first meeting of the IBC since the announcement,
in June 2000, of the completion of the first provisional draft of the human
genome. Although the mandate of the IBC is wider than human bioethics and
the human genome, it was natural that the meeting should be mostly concerned
with those topics.
Amongst the issues which the IBC members discussed were public education
in bioethics; intellectual property protection of biotechnology; and the
implications of embryonic stem cell research and development.
Education issues occupied an important session. Unless the public and its
elected leaders understand the developments of genomic science, they can
scarcely be criticised for failing to perceive, and to act upon, the implications
which such science presents for the law and society. The subject of intellectual
property protection is obviously amongst the most important presented by
advances in knowledge about the genome. Although the Universal Declaration
of the Human Genome and Human Rights, adopted by the IBC and accepted by
the General Conference of UNESCO and the General Assembly of the United
Nations, speaks of the human genome, in its natural state, as part of the "common
heritage of mankind" intellectual property law is invoked to provide
temporary rights of patent holders to licence scientific processes, by
reference to the genome. Pharmaceutical corporations and others justify
these rights on the basis that, unless guaranteed such protection for new "inventions",
the huge investments that are necessary to translate basic scientific knowledge
into useful therapies, tests and other treatments, of benefit to humanity,
may not occur. In my experience, now over ten years, it can be said with
assurance that this is a topic that causes very strong feelings in any
international meeting at which it is raised. Participants from developed
countries tend to emphasise the importance of applying intellectual property
regimes, both international and domestic, to genomic technologies so as
to maximise the benefits derived from them. Participants from developing
countries express concern that such laws will be used to deprive them of
a share in the medical advances that will flow from unveiling the genome.
In short, they express concern that intellectual property law will be used,
in effect, to isolate people in developing countries from effective access
to knowledge about human genetics and the application to which that knowledge
is put. During 2001 UNESCO convened a special symposium on this
subject.
Arising out of that meeting a working group has been established to chart
future policy. That group met in Paris earlier this month. I am rapporteur
of the group .
FORBIDDEN TERRITORY OR THERAPEUTIC POTENTIAL?
Probably the hottest topic on the agenda of the IBC in Quito concerned
the use of embryonic stem cells. This topic is controversial because of
different views adopted by different religious and other teachings, concerning
the morality of experimentation involving human embryonic cells. Within
these cells, the so-called "stem cells" - which represent the
earliest forms of human living material - are believed to have great potential
utility for medical research and therapies. The prospect was described
recently in the Washington Post, in terms that are easily understood:
"
Pick a disease - Alzheimers, cancer, diabetes. You want The Cure. Scientists
take some of your skin cells and create your clone in a Petrie dish. In
about a week, the cloned embryo is the size of a period at the end of a
sentence. Theoretically this small cluster of cells has the potential to
become a human being. But your clone is not destined to born. ... Instead
the cloned embryo will become a kind of natural factory in which your body's
generic cells are grown and shaped into cures - brain cells for Alzheimer's,
bone marrow cells for cancer, pancreatic cells for diabetes".
Many observers, mostly scientists, and a good number of those participating
in the IBC meeting in Quito, shared an enthusiasm for the potential of
this scientific development. To them, it promises the relief of unnecessary
pain and premature death caused either by genetic predisposition to disability
(such as Alzheimer's Disease, Parkinson's Disease or Huntington's Disease)
or traumatic injury occasioned, perhaps, by genetic predisposition (such
as the death of heart muscle caused by myocardial infarction). The prospect
of utilising human stem cells, cloned to the recipient, calling upon their
puripotent (or even totipotent) capacity to replicate the cells of the
disabled person, fills many scientists, and not a few lay people, with
wonderment and anticipation at the awesome products of the human mind and
modern technology.
However, some of the participants in the Quito meeting shared concerns
about the use of embryonic stem cells - even those as tiny as the cells
described above. Did this not mean utilising the cells of an embryo which
was the first product of a human conception, and thus, potentially (given
conducive circumstances) capable of developing into a full human being?
GENETIC DISABILITIES AND ELIMINATION
Pursuant to the Universal Declaration on the Human Genome and Human Rights,
a number of representatives of patients' associations were invited to the
IBC in Quito. They addressed a meeting which, on this topic, was held in
plenary session and in public. The representatives of the patients' associations
spoke of the genetic revolution from the point of view of those who themselves
suffer, for example, from Parkinson's Disease or who are members of voluntary
bodies formed to represent, and protect the rights of, family members suffering
from genetic conditions, such as Huntington's Disease.
The explanation of the viewpoints of the patients' associations was extremely
moving. As I was later to explain to the IBC, they struck a chord with
me because of my own experience as a homosexual man. Although I do not
regard my sexuality as a "disability", there is no doubt that
some people would do so. Indeed, the hate mail I have received since publicly
disclosing my sexuality, indicates that this view is not at all uncommon,
even in relatively enlightened Australia. I therefore partially understand
the feelings of people with genetic conditions and family members of such
people, when the issue that is crucial to this debate is raised. That issue,
put simply, is elimination.
In many countries, including Australia, the foetus, in certain cases, is
virtually automatically checked for evidence of the assistance of genetic
conditions such as profound mental retardation. Pre-implantation checking
of the embryo is also becoming more common. In such cases the parents are
given counselling which, in many instances, leads to rejection of the embryo
or termination of a pregnancy. Of course, rejection or termination are
not obligatory. But termination decisions are regularly made. Apparently,
they are condoned by law in most jurisdictions and certainly by medical
practice.
The issues which are presented by the advance of the human genome project
include the question of how far down the road of elimination our societies
will go. Is it conceivable, either in the short term or some time in the
coming century, that a foetus will be aborted for no reason other that
it manifests the gene for Huntington's Disease? Or for sickle cell anaemia?
Or for schizophrenia? Or for early onset baldness? Or (if it ultimately
be shown to be a genetically influenced condition) homosexuality? By what
principle is elimination to be allowed or forbidden in law?
It is important to note that the absence of law will, effectively, turn
such questions over to be determined, in effect, by parents and the doctors
who advise them. Social forces, public opinion and even economic considerations
may then influence the determination of where the line is drawn. We may
think it intolerable to eliminate a foetus for reasons of potential baldness.
But if parents desire to avoid a family tendency towards early baldness,
should they be forbidden choice of an embryo without that gene, in preference
to one with it? Is there a risk that a schedule of undesired genetic conditions
may be established, affording a comprehensive screening process through
which embryos in vitro or foetuses in utero are tested to assure parents
of the child of their dreams?
If such practices are not prohibited by law, it is likely that, within
the market, somewhere, some such developments will occur. Anyone in doubt
should reflect upon the significant ill-balance between male and female
infants in India and China. If this can occur with reference to one genetic
condition - sex - and often without sophisticated medical technology it
will, before long, be available by reference to a multitude of other conditions
deemed by particular parents to be unwanted in their child. Where would
this have left the embryo that, born, produced Beethoven with his congenital
deafness? Milton with his blindness? Mahler with his heart defect? In the
past, the variety of humanity has been a feature of human freedom; and
also, sometimes, a very practical protection against genetic diseases and
epidemics.
DISABILITY, DISCRIMINATION AND THE GENOME
With every year, the advance of genomic science brings new paradoxes that
have to be resolved. A report in English newspapers has disclosed a fresh
quandary; but it is likely to present itself in Australia before long if
it has not already arrived. The science editor of a London daily reported
that disabled parents in England are now seeking the right to choose to
have disabled children, produced with the aid of new genetic screening
tests that are becoming more widely available. According to the report,
government advisers in Britain are considering allowing deaf parents to
decide to have deaf children on the basis that it might be in the child's
interests to be born with the same disability as their parents. The issue
was raised by the British Human Fertilisation and Embryology Authority.
Reportedly it is considering the ethical implications of the technique
that can distinguish between healthy and abnormal "embryos in the
test tube". Critics of the proposals were said to be arguing that
wide scale introduction of Preimplantation Genetic Diagnosis (PGD) would
raise the prospect of disadvantaged babies being conceived and delivered
deliberately, because specifically chosen by parents with similar disabilities.
Supporters of the proposal have argued that certain disabilities, such
as deafness, are so mild that it could, in the long term, be in the best
interests of a child to have the same disability as its parents so as to
experience a similar life and outlook.
Professor Alan Templeton, Chairman of the Working Group on PGD at the British
Authority, reportedly stated that the issue had been raised by patient
bodies, including those representing certain kinds of dwarfism. Patients
in such bodies have expressed the opinion that they should be allowed to
choose children more like themselves. The issue has divided opinions amongst
obstetricians and gynaecologists who advise the Authority's committee.
Some, who have considered the matter, regard the notion of choosing deliberately
an embryo manifesting deafness or dwarfism genes as pandering to the desires
of parents rather than reflecting the best interests of a child. Ordinarily
decisions affecting children must conform to the best interests rule. But
where does the best interest of a child lie in a family where a disability
exists in one or both parents? A spokesman for the National Deaf Children's
Society explained concern that he felt about genetic testing:
"
Naturally I'm concerned at the possibility of it being used for 'cleansing'
of deaf children but it can be a great tool in early diagnosis for hearing
parents in order to prepare all the support for their deaf children".
The recent developments in technology, including cochlea implants, have
revolutionised the assistance that can be given to those deaf persons who
desire to improve their hearing mechanically. But is the logic of such
technology the ultimate removal from the human family of deaf persons,
diagnosed by genetic testing? Is this a legitimate advance of science and
the removal of a disability that is a burden on the person affected, his
or her family and perhaps the state? Or is it an attempt to manipulate
science to perform a form of disability cleansing? Does one's answer to
these questions reflect a stereotyped conception of the perfect child,
which itself can be manipulated by media and public opinion? Given that
most parents are heterosexual, few might naturally feel a strong desire
to have a child who was homosexual. Yet, in the past, a proportion of every
society has been homosexual. If the criterion is identity with parents,
where does the application of that criterion stop? In the randomness of
nature there were disabilities, it is true. But there was also variety
and difference that contributed to the world of dazzling variety, as we
know it.
THE OBLIGATION OF ENGAGEMENT
These are some of the issues which the human genome project presents to
the global community. Obviously, they are issues of considerable importance
to society and the law. They have relevance to ethics and genetic discrimination.
They concern people living with disabilities, their families and representative
organisations.
At least the IBC of UNESCO is listening to the voice of patient organisations.
An expression of solidarity with patients' associations was adopted at
the meeting in Quito. It was not very specific. It did not go into the
details of the measure of the solidarity and the implications of it for
the issues, some of which I have outlined. It will be important in the
future work of the IBC that patients' organisations should be regularly
heard. And when they are heard, the question will have to be answered.
When is human variety a disability? Some genetic conditions are distinctly
bad news. There is no inherent beauty in prolonged pain and human suffering,
genetic or otherwise. There is no glory in the premature termination of
sentient human life and sensibility. Relieving pain and suffering and promoting
life and sensibility are generally good things. They are worthy objectives
of morality and of law. But sometimes disability depends upon the eye or
ear or mind or heart of the beholder. Getting agreement on these issues
is difficult locally, more difficult nationally and almost impossible internationally.
Yet they undoubtedly present an international challenge. UNESCO's IBC does
not have the option to ignore the puzzles of genomics nor do we in Australia
have that option. None of us has such an option. To ignore is to decide.
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