First published as a special edition of the 'Disability Tribune' in February 2000
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As many of the ‘Disability Tribune's’ readers know only too well, when lives around you are affected by the absence of even the most basic health care, cutting-edge medical science seems irrelevant.
In view of the existing inequalities in health care, there are good grounds to believe that the benefits of biotechnology will not be shared equally across societies, or indeed, around the globe.
At the same time, many disabled people are excited by the advances offered by biotechnology - often because it might mean that other people will be spared the pain and social exclusion they have faced.
Without a scientific background, biotechnology can be a difficult subject to find out about: the language used is new and complicated and truly independent advice is hard to find - the biotechnology and pharmaceutical industries have strong financial incentives to present a favourable impression of their efforts - but the price of failing to find out about biotechnology may be higher than the disability community can bear.
This Special Edition of the ‘Disability Tribune’ has just one aim: to show how important it is that disabled people, and their representative organisations, contribute to the biotechnology debate. Quite apart from joining the debate with scientists and policy makers, if those with opposing views in the disabled community fail to engage in dialogue, biotechnology may become another issue that divides and isolates our community.
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There is just one question that lies behind this Special Issue: “where, if at all, do disabled people fit into the brave new world of biotechnology?”
Bioethics has been at the forefront of my mind because - specialist knowledge or not - recent events have convinced me that disabled people and their supporters MUST monitor developments in biotechnology, as if our lives depended on it. If we are not very careful, our lives WILL depend on it!
DAA's readership is drawn from regions with very different resources and opportunities. Despite the different backgrounds that our readers bring to this Special Edition, I am convinced that biotechnology remains vital, because decisions being made in our name will affect all disabled people.
Once we have let the genetics-genie out of the bottle, can it ever be forced back in again?
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Although this edition will undoubtedly raise issues that question scientific wisdom or practice, it is not our intention to criticise the profession as a whole.
We willingly accept that doctors, around the globe, are often put into impossible situations by issues outside their control - perhaps the most obvious being the duty to allocate scarce resources. Although a cliché, we also entirely agree that the majority of health care professionals are dedicated and committed to their patients, but such professionalism is not universal - as recent stories in the ‘Disability Tribune’ have shown - the scientist's obsession to improve things for the majority can lead to obscene abuse of the minority.
In seeking to join the biotechnology debate, as equal partners, the price we will almost certainly have to pay will be sharing the unpleasant burden that we, as a society, have previously been happy to let the medical profession bear alone.
Many writers make grand claims for science - that it is the new 'religion' that it holds all the answers for the future and that scientists are the new 'power elite'.
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top of the pageOn the other side of the coin, recent scandals have contributed to a growing mistrust of scientists, doctors and biotechnologists who dismiss efforts to regulate the work they do; pathologists who remove the internal organs from dead children, without their parents consent and doctors who withdraw treatment and/or nutrition from patients in their care.
We may not share the scientist's specialist knowledge or understanding but, increasingly, as disabled people and patients we are reserving the right to say 'enough'.
There is a growing fear that the moral and ethical issues around biotechnology and medicine are lagging behind scientific advances, and history provides ample evidence of the risks involved in such a situation.
Biotechnology is an issue that the disabled community MUST be part of!
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In discussing biotechnology, it is easy to assume (as indeed did I) that everyone knows and agrees what the term means. So, before repeating this mistake, let's spend a moment talking about what 'biotechnology' means.
‘The Oxford English Reference Dictionary’ [Oxford University Press, 1996] defines 'biotechnology' as:
As is common with anything scientific, this definition throws up a number of terms with specific meanings that may not be immediately clear or obvious! What for example are 'genes' and 'micro-organisms'?
Staying with ‘The Oxford English Reference Dictionary’, we are told that a 'gene' is:
that 'micro' means:
and ‘organisms’ are:
oh dear, this doesn't seem to be helping much...
Perhaps a simpler, if less exact, way of describing 'biotechnology' is to think of scientific activity that affects the processes of nature, particularly at the level of genes.
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top of the pageIt is certainly true to say that much of the biotechnology reported in newspapers, magazines and on television concerns making things 'better' - making them grow quicker, bigger or with greater resistance to pests and disease.
So, according to this view, biotechnology might be thought of as scientists acting to remove 'unwanted' characteristics in the genetic structure of living things.
The 'unwanted' things that cause the least disagreement are the diseases that many of us find terrifying - cancer for example.
However, according to some reports, almost everything about us has its basis in our genes, so some scientists are researching ways of manipulating the 'genetic origins' of things other than disease and illness; in some cases what we might call our personal characteristics - our hair colour, height, intelligence, aggressiveness, sexual orientation - are being examined.
But wait a moment, we are moving too fast here, we are already discussing the implications of biotechnology, rather than its meaning. It is precisely this that bioethics seeks to address. For our purposes, 'bioethics' can be defined as:
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top of the pageIt should not be thought that this way of defining 'biotechnology' assumes that the 'natural' way is the 'best' way - disease and death are 'natural', but most of us would rather avoid them! What is important is that scientists are manipulating the genes of living things in an effort to achieve a particular outcome.
Having considered what we mean by 'biotechnology' and 'bioethics', let's turn to some of the issues involved...
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Few of us would be opposed to research that holds the promise of finding cures for humankind's killer diseases - although we should be aware of the difficulty in separating what can be achieved from what scientists hope will be achieved.
Perhaps the more honest approach is to use the gun-lobby example: biotechnology is neither good nor bad, it is the use to which biotechnology is put that can be good or bad!
As we have already said, few would disagree that fatal or debilitating diseases should be cured, but there is no guarantee that scientific effort will be devoted to disease alone - biotechnology is primarily funded by private corporations and, not surprisingly, they would like to get a return on their investment.
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top of the pageSo, can we be sure that human need, rather than economic priorities will be at the forefront of biotechnology? The only possible answer is 'we don't yet know'.
There are other unresolved issues: on the previous page I mentioned that: 'biotechnology might be thought of as scientists acting to remove 'unwanted' characteristics in the genetic structure of living things.' This approach highlights one of the issues that cause some disabled (and non-disabled) people particular concern: who decides what characteristics are 'unwanted'?
Because of the negative reactions faced by disabled people on a daily basis, many fear that biotechnology will be used to renew the eugenic principles that have been so popular throughout the twentieth-century. Evidence from scientific journals gives little cause for optimism: with increasing efforts to differentiate between ‘positive’ and ‘negative’ eugenics and renewed claims that working to remove unwanted characteristics from human stock is a noble activity.
Recent developments in health care provide more worrying evidence still. There is increasing evidence that medical decisions are being strongly influenced by 'cost-benefit' analysis: treatment decisions are made on an assessment of what is the best use of scarce resources, not just the 'best interests' of the patient.
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top of the pageWhere disabled people are admitted to hospital with potentially life threatening conditions, some doctors decide that they should not be resuscitated, on the grounds of subjective assumptions about disabled people's lives.
It is all too easy to dismiss such concerns as 'emotive' or 'alarmist', criticism that is well known to campaigners, but such arrogant disregard for genuine worries simply serves to show how great a problem we face.
Finally, as the following article will show, medical research is not necessarily aimed at those diseases that kill the greatest number of people. The conditions that afflict people in the wealthy northern states appear to have a disproportionate effect on decisions regarding research funding.
Whilst biotechnology may, at some future time, be able to offer cures for the great killer diseases, it might also be used for cosmetic or consumer purposes: ‘designer babies’ provides the obvious example. With the dominant role of private corporations, will biotechnology simply become a consumer product, to be bought by those who can afford it?
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Access to health care is not enjoyed universally or equally. In a number of highly developed economies, personal wealth remains the key to accessing health care.
WHO's 1995 ‘World Health Report: Bridging the Gaps’ identifies an economic phenomenon - poverty - as 'the world's deadliest disease.
The 1996 report published by UN Department of Public Information 1 ‘Poverty: Casting Long Shadows’, states that:
According to the UN Department of Public Information 2:
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top of the pageWhilst:
We already have evidence that existing priorities in medical research are weighted toward conditions that affect the wealthy regions of the planet. 4 Although, globally $56 billion is spent on medical research each year, over 90% of that sum is devoted to the health problems of just 10% of the world population.
The traditional business response to such inequality is to suggest that decreased regulation and greater commercial opportunity will ensure that such unfairness is reduced. Such claims have served to fuel the rapid globalisation that has marked recent economic development but, as another UN Report 5 has shown, hopes of a wider share in the benefits of globalisation have not been realised:
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top of the pageThe greatest challenge in global business is exactly the same as that of biotechnology: finding ways to ensure that the progress of regulation and supervision keeps pace with what is actually happening in the world around us. To date, both globalisation and biotechnology have developed considerably faster than our ability to control them.
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Agencies of the United Nations have already undertaken some work on bioethics.
Of particular relevance is UNESCO's ‘Universal Declaration of the Human Genome and Human Rights’, adopted at the 29th Session of the General Conference in 1997.
The Declaration, which disabled people helped to draw up, begins:
Article 1
“The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity.”
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“a) everyone has a right to respect for their dignity and for their human rights regardless of their genetic characteristics.
b) That dignity makes it imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity.”
We believe that the UNESCO Declaration makes an important contribution to the ethical impact of biotechnology and encourage representative organisations to become familiar with it.
For those with access to the Internet, the UNESCO website homepage is at the following address: http://www.unesco.org/
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top of the pageThe Declaration is available in English and French and is most easily found by selecting 'Documents' from the UNESCO homepage and searching for the document by its title. The English language version should be available at: http://unesdoc.unesco.org/images/0010/001096/109687eb.pdf
In 1999, Professors Abdullah Daar and Jean-François Mattei prepared draft guidelines on bioethics for WHO. Although DAA had not received details of the guidelines from WHO, we were alerted to their existence and, having carefully studied the proposals, felt that it was important to respond.
Although DAA made some proposals for amendments to, and clarification of, the guidelines, we welcomed the scholarly and ethical approach adopted. We were delighted with the significant contribution that the draft guidelines made and were keen that WHO should adopt them.
Unfortunately, the precise status of Professors Daar and Mattei's Guidelines, and the amended and expanded documents subsequently produced, is unclear. At a December 1999 consultation, hosted by WHO in Geneva, participants (including DAA) were asked to comment on the role that WHO should take with regard to bioethics, but not on the work of Professors Daar and Mattei.
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top of the pageThe clear message from the Consultation was that WHO had an important role to play in bioethics, and it is understood that this message will be passed to the General Assembly.
Professors Daar and Mattei's final report: ‘Medical Genetics and Biotechnology: Implications for Public Health’ is shortly to be presented to the WHO General Assembly, when a decision will be made about its availability to the public.
DAA believe that the Report offers an excellent resource for the disability community, and sincerely hope that it will be widely available as soon as possible.
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The other day I was speaking to a friend, who also uses a wheelchair, and also has a type of muscular dystrophy, she asked me what I was doing. I told her I was reading about genetics. "Oh", she said. 'You mean about all those people who want to get rid of us.'
Her reaction is not uncommon among disabled people, especially those of us in the disabled peoples' movement, where we feel a strong sense of community, share a pride in who we are and have become acutely aware of the many forms of discrimination and the abuses of human rights which, for us, define disability. We now see another abuse is being added - discrimination because of what genetics purports to offer.
So what does it offer? Cures of course, the final solution for disability.
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top of the pageFor most people that sounds wonderful. After all, does society want children born with muscular dystrophy or cystic fibrosis? If these and other conditions can be prevented with the help of clinical genetic intervention what could possibly be the problem? There are, of course, a great many problems. But the most obvious is that after billions of dollars and a decade of orchestrated hype from the biotech-medical industry, there is no gene therapy that has worked.
At a recent (1998) conference, Dr. William French Anderson, who pioneered the first genetic therapy protocol in the early 1990s, said:
"The unfortunate fact is that, with the exception of a few anecdotal cases, there is no evidence of a gene therapy protocol that helps in any disease situation. We were all a little naive to think that if we made a viral vector and put it into the human body it would work. The body's done a very good job of recognising viral sequences and inactivating them. So the answer to your straightforward question 'Does gene therapy work?' is, at this point in time, it does not work."
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top of the pageWith no effective somatic gene therapy likely and even people like French Anderson admitting that we are probably two decades away from successful germ-line therapy, where does this leave disabled people right now? We can talk about "what if" forever. Fantasy has its place, but let's instead talk about what is. And "What is" is simple. The only proven cure for the vast majority of genetic conditions is Singer's infanticide, abortion following genetic testing or embryo selection as part of IVF.
Now and for some time to come the Biotech Steamroller has nothing to offer disabled people. But perhaps the worst aspect of the entire project is that it has come in a wrapping that is, itself, disabling. To justify the steamroller, we have been presented at best, as objects of pity, at worse as costly mistakes that could be avoided. Why else would we need so desperately to be cured? Why else would an eminent researcher have said recently, "Soon it will be a sin of parents to have a child which carries the heavy burden of genetic disease."?
It is clear that while the hype has been about cure, the reality is about termination. Under the wheels of the Biotech Steamroller a climate of intolerance against disabled people is being fostered.
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top of the pageAnd no one is listening to us, the only ones who know the territory which geneticists claim as theirs - the quality of our lives. As Susan Wendell has observed:
"The desire for perfection and control of the body, or for the elimination of differences that are feared, poorly understood, and widely considered to be marks of inferiority, easily masquerades as the compassionate desire to prevent or stop suffering. It is not only a matter of being deceived by others, but all too often a matter of deceiving ourselves. It is easy to make the leap from imagining that I would not want to live in certain circumstances to believing that no one would want to live in those circumstances, to deciding to prevent people from been born into those circumstances, to supporting proposals 'mercifully' to kill people in those circumstances - all without ever consulting anyone who knows life in those circumstances from experience."
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top of the pageMost disabled people do not oppose medical research or genetic testing - if it is part of an ameliorative therapy or the treatment of illnesses or genetic conditions. What we do oppose is eugenic cleansing carried out in the name of treatment. The price is too high for everyone.
Dr. Bill Albert is the chair of the International Committee of the British Council of Disabled People, the UK national assembly of Disabled Peoples' International Europe.
The British Government recently announced that Dr Albert has been appointed as a member of their new Human Genetics Commission.
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A particular difficulty in assessing the benefits and risks of biotechnology is caused by the conflicting information available. This case study provides information about the treatment of AIDS in an African state, together with mention of the range of issues and people affected.
We have tried to ensure that the information is provided in an entirely objective way, indeed, this is the whole point of the Case Study: to show just how complex the issues are!
AIDS is now the leading cause of death in Africa. The UN Aids Programme is predicting that there will be 13 million Aids orphans this year, most of them in Africa.
After investing significant sums of money in research, pharmaceutical companies are now able to offer drugs that produce dramatic improvements for Aids sufferers - making the disease something that can be managed rather than an inevitable death sentence. In the particular case of pregnant women infected with HIV, correctly prescribed and administered drugs can significantly reduce the chances of the unborn child becoming infected.
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top of the pageMany African states claim that they are unable to afford the cost of drugs for Aids-sufferers. In at least one case, a country has reacted by passing legislation that would allow them to obtain cheap and effective drugs from any source, including those for Aids-sufferers.
This law has never come into operation, because 41 pharmaceutical companies began legal proceedings in the Constitutional Court, claiming that the legislation makes it possible to avoid intellectual property rights. The matter has yet to come before the Court.
As well as beginning legal action, the pharmaceutical industry sought the support of the US government, claiming that the African legislation breached World Trade Organisation [WTO] rules. The pharmaceutical industry is clear in its objection to any measure that threatens intellectual property rights: that it ‘reduces the funds available for research into new drugs and treatments’.
U.S. presidential hopeful Al Gore, currently Vice-President of the U.S.A., has been dogged by allegations that he took a leading role in trying to persuade the African state to repeal its law on obtaining cheap and effective drugs. Media reports suggest that a U.S. pressure group for Aids sufferers have followed Mr Gore around the country as he campaigns for the Presidency.
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top of the pageDespite the pharmaceutical companies attempts to challenge the law, both in the courts and at the WTO, some of them are reported to have offered Aids drugs to African states at a heavily discounted price or at no cost, when they are linked to drug trials.
Finally, some reports claim that cost is not the issue. The same African state is said to be facing a public health catastrophe, with hospitals facing financial collapse. Whilst the government claims that it has banned the use of Aids-drugs on financial grounds, some health care professionals believe that it is actually part of a campaign to reduce the number of Aids orphans; if unborn and infected children die, they cannot become orphans.
What are the 'facts' here?
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As is so often the case these days, those with access to the world-wide web will find it easiest to access a wealth of information on biotechnology. All that is necessary is to enter 'biotechnology' in your favourite search engine and track the numerous links provided.
Anyone searching for information on biotechnology, from whatever source, should be aware that much of the available information offers opinions, rather than objective analysis. Although often providing well resourced sites, those of pharmaceutical or biotechnology companies should be treated with particular caution.
The University of Minnesota's Center for Bioethics was established in 1985 with the mission of advancing and disseminating knowledge about ethical issues in health care and the life sciences.
The Center is open to all points of view about moral values and principles and its site is available at: http://www.med.umn.edu/bioethics/
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top of the pageThe National Bioethics Advisory Commission, established as an independent advisory group by the U.S. President, offers access to a wealth of relevant reports and material. Go to: http://bioethics.gov/cgi-bin/bioeth_counter.pl
The Third World Network aims to provide information on biotechnology, particularly genetic modification of crops and the consequences for southern states. Their homepage is available at: http://www.twnside.org.sg/souths/twn/
'The U.S. Human Genome Project (HGP) has several goals including mapping, sequencing, identifying genes, storing and analysing data, and addressing the ethical, legal, and social issues (ELSI) that may arise from availability of personal genetic information. The ultimate goal of the HGP is to obtain the DNA sequence of the 3 billion DNA subunits present in human DNA. Links to follow progress toward all HGP goals are provided' at: http://www.ornl.gov/hgmis/home.html
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top of the pageProgress of the human genome project can be checked by visiting a site sponsored by the U.S. Department of Energy: http://www.ornl.gov/hgmis/project/progress.html
An important resource for those readers with an e-mail account is offered by a discussion forum of the International Network on Bioethics and Disability. The forum is open to everyone who is interested in how bioethics affect disabled people, other marginalised groups and the public at large and how bioethical theories affect human/equality rights. The list is moderated by Gregor Wolbring, an old friend to DAA. If you want to find out more about the Bioethics List point your browser to Gregor's website at: http://www.bioethicsanddisability.org/start.html
Finally, as reported in a previous edition, DPI Europe is hosting a conference on ‘Disabled People, Bioethics and Human Rights’ in February 2000. The conference is the first of its kind and we will provide detailed reports of the conference proceedings and outcomes in a future edition.
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Accusations that this Special Edition of the ‘Disability Tribune’ has struck a cautious note would be entirely justified - as would claims that the space available has severely restricted the range of issues that could be addressed.
We believe that a cautious approach to biotechnology is the only prudent response. Disabled people, from whatever region, can and do cite numerous examples of regular, often institutionalised, abuse of even the most basic human rights. Such evidence ensures that the disabled community will be wary of further medical and state intervention in their lives.
Perhaps more worrying still is the extent to which policy-makers, civil servants and 'expert' panels have been indifferent to, or perhaps simply ignorant of, the disabled community's calls to be included in the numerous bioethics debates going on around the world. Having campaigned for, and often won, the right to be included in other debates that concern us, we are now finding that the same institutions to which we had finally gained limited access are forgetting us all over again.
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top of the pageQuite apart from these problems, many of us worry that representative organisations of disabled people, and their members, have yet to appreciate the opportunities and threats that biotechnology poses.
We entirely understand that a community as large and diverse as the disabled community will hold very different, sometimes competing, views about biotechnology. We respect that diversity of opinion, but suggest that important decisions still continue to be made without any reference to the views of disabled people.
The disabled community is used to being denied access to important debates, particularly those that have a direct effect on our lives, but biotechnology and access to health care are debates that we must be a part of. We look to international, regional and national agencies to respect our claim to be represented, and to consistently work to achieve that representation.
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top of the pageFurther, we call on international, regional and national agencies to ensure that disabled people have access to accurate and reliable information - only then can we hope to join the debate as equal participants.
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