Disability Tribune, Special Issue-Disability and bioethics

February 2000

In this issue...

Biotechnology - an issue the disability community cannot afford to ignore!

Editorial

What is 'biotechnology'?

So biotechnology is 'good'?

Health Inequality

The United Nations

Opinion: The Disabling Story of Gene Therapy

Case Study

Resources

Conclusions

Biotechnology - an issue the disability community cannot afford to ignore!

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 healthcare, cutting-edge medical science seems irrelevant. In view of the existing inequalities in healthcare, 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 industry's 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 organisation's, 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.

Editorial

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!

 

Bioethics... from Ankara to Zimbabwe

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?

 

A doctor's lot is not a happy one...

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 healthcare 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'.

On the other side of the coin, recent scandals have contributed to a growing mistrust of scientists and doctors-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 patient's 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!

What is 'biotechnology'?

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: "The exploitation of biological processes for industrial and other purposes, especially genetic manipulation of micro-organisms (for the production of antibiotics, hormones etc)". 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: "A unit of heredity which is transmitted from parent to offspring, usually as part of a chromosome." that 'micro' means: '1. Small (or) 2. Denoting a factor of a millionth' and 'organisms' are: '1. A living individual consisting of a single cell or a group of interdependent parts sharing the life processes...'

Perhaps a simpler, if less exact, way of describing 'biotechnology' is to think of scientific activity that affect the processes of nature, particularly at the level of genes.

It is certainly true to say that much of the biotechnology reported in newspapers, magazines and on television concern 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:

The development of a set of moral principles for medical and biological research. It 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...

So biotechnology is 'good'?

 

Well, perhaps...

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.

So, 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 healthcare 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. Where 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 the problem that 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?

Health Inequality

Access to healthcare is not enjoyed universally or equally. In a number of highly developed economies, personal wealth remains the key to accessing healthcare.

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: 'Without concerted global action to eradicate poverty, this biggest single underlying cause of death, disease and suffering worldwide could cause many of the great achievements in health in recent decades to be thrown into reverse.'

According to the UN Department of Public Information 2:

 

• "Poverty remains, endangering both the people and the planet: one in every five people lives in poverty, the poorest on less than $1 a day;
  
• Eight hundred million people, 200 million of them children, are chronically undernourished and at risk from unsafe water;
  
• The world's poorest 50 countries are home to 20 per cent of the world's population, yet they account for less than 2 per cent of the world's income;"

Whilst:

 

• WHO estimates that between 1,300 and 2,500 million people - more than one-third of the world's population - have little or no access to "essential drugs" - defined by WHO as those "indispensable" drugs which "should be available at all times, in the proper dosage forms, to all segments of society". 3

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:

...The past decade has shown increasing concentration of income, resources and wealth among people, corporations and countries:

... The recent wave of mergers and acquisitions is concentrating industrial power in megacorporations - at the risk of eroding competition. By 1998 the top 10 companies in pesticides controlled 85% of a $31 billion global market - and the top 10 in telecommunications, 86% of a $262 billion market.

... In 1993 just 10 countries accounted for 84% of global research and development expenditures and controlled 95% of the US patents of the past two decades. Moreover, more than 80% of patents granted in developing countries belong to residents of industrial countries.

The 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.

 

Notes

1. DPI/1783/POV 1996 obtained on-line from the International year for the Eradication of Poverty website.
2. DPI/1779/POV, February 1996, obtained on-line from the International year for the Eradication of Poverty website.
3. 'Diseases, Drugs and Donors in the Third World', published in the October 1999 issue of 'Corner House', a research and solidarity group based in the U.K. Quoted in 'Health: TRIPS & WHO Further Marginalising the World's Poor' by Someshwar Singh, first published 1999, South-North Development Monitor, obtained on-line from Third World Network.
4. 'Health: TRIPS & WHO Further Marginalising the World's Poor' by Someshwar Singh, first published 1999, South-North Development Monitor, obtained on-line from Third World Network.
5. Human Development Report 1999 - Globalization with a Human Face, United Nations.

The United Nations

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."

Article 2

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/

The 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-FranÁois 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 Professor 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. The 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. Professor 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.

Opinion: The Disabling Story of Gene Therapy

 

Bill Albert

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.

For 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."

With 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. And 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."

Most 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.

 

'Most disabled people do not oppose medical research or genetic testing... What we do oppose is eugenic cleansing carried out in the name of treatment. The price is too high for everyone.'

Case Study

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. Many 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.

Despite 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 healthcare 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?

Resources

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/

The 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

Progress 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 the Bioethics List, a group of people interested in bioethics and disability, who regularly exchange news and information by e-mails posted to the list.

To learn more of the Bioethics List, point your browser to:
http://www.onelist.com/community/Bioethics

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 at outcomes in a future edition.

If you have any other resources that you think we should know about, please contact DAA at the usual address.

Conclusions

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.

Quite 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 pose. 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 healthcare 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. Further, 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.

 

Please note

Readers are encouraged to copy and circulate contents of the Disability Tribune.

We would, however, ask that where DAA material is used, it is attributed to us.

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