A Note by the Director (Ditchley 2004/04)
12-14 March 2004
Over a weekend which began in snow and ended in sunshine, we discussed the impact of advances in biogenetics on politics and society. We were fortunate to have around the table those who had thought deeply about the science, those concerned with its effects on our societies and those whose task was to mediate between them. Before looking in detail at the ethical, medical and economic questions raised by the current and possible future exploitation of the sequencing of the human genome, we debated the general implications of our increasing ability to modify both plant as well as animal, including human, life.
It was suggested that biogenetics represented an alliance between science and a popular passion for the pursuit of perfectibility or self-mastery, in which nature’s errors could be corrected. But this caused us to question the sort of society we represented, which seemed ruthlessly individualistic with the potential to do harm to those individuals who were left behind and who might not be thought to be full members. Biogenetics confronted us with the profound ethical question of what it was to be human. Public debate on such questions was difficult, with a tendency to hyperbole and polarisation. Finding a consensus usually meant that no one party was completely satisfied and even when a consensus was reached it was continuously tested in the light of new experience. Having created powerful tools to widen our knowledge we also needed to consider how such technologies could help the 90% of the world’s population who were not North Americans or Europeans. There was currently little research into southern hemisphere diseases We noted that some countries, among them India, China, Cuba, Brazil and South Korea, saw biotechnology as a way of catching up with and even overtaking the West. Some of us thought it was not easy to draw a clear distinction between research for gene therapy and human enhancement. At a basic level, even vaccination could be considered a form of enhancement. Stem-cell research might be able to treat diseases of old age, but in considering stem-cell treatment, we were reminded that it was unlikely to be available on any significant scale for a considerable time. One participant expressed the view that, like most major technological advances, its effect could be overestimated in the short-term and underestimated in the long-term. It would probably cause a major change in our understanding of what it was to be human. A plea was made for robust and flexible institutions to mediate between science, politics and the public. The preparation of national officials to handle these new issues was also thought to be important. Those working in Government should be encouraged to have a futures perspective and to give due weight to the international dimension. We asked ourselves a question which was to run through our discussions: what was the rational course of action in the face of great uncertainty? Was our uncertainty a reason for not affecting policy?
In discussion of the ethical issues a number of broad themes were identified without a general consensus being reached on any of them. It was widely agreed that there should be a democratic presumption of freedom to research and use the technology which should only be restricted if there were strong grounds to show that harm would arise. There could be costs associated with both activity as well as inactivity, and the cost of the latter for an individual could be very great, which raised the difficult question of individual rights against collective goods. The point was also made that it was not exclusively a matter of not doing harm but also, more positively, of showing respect for the dignity of the human person. The precautionary principle, elaborated in 1992 at the Rio Earth Summit, was discussed. In some interpretations it was claimed that it had been used in attempts to block further advances, others thought that it was reasonable to put the burden of proof that no harm would be done on the scientists who might plan to change millions of years of evolution in a second. We considered the role of the state and its duty to protect children from their parents. This, we thought, gave rise to difficult judgements in regard to genetics. Should parents have the right to alter their children’s genetic make-up including choosing its sex. Should a child not be loved for itself? Sex was not a disease, commented another participant, and another suggested a licensing scheme on a trial basis allowing sex selection to determine if wider societal disadvantage would emerge. Were parents acting selfishly in relation to their children by seeking enhancements? What would that do to their children’s later opinion of themselves, would it devalue, in their eyes, any of their later achievements? These were questions on which we reached no consensus. This led us to problems of social justice. Given that gene therapy was very expensive, should we seek to deny the use of money as a means of buying privilege? Some, however, thought we should not avoid doing good for some because we could not do it for all.
We considered three other ethical issues in some detail. The first concerned the putative difference between genetics and other medical developments. In many instances, we thought, the problems were the same or similar. But fundamental questions did arise from the permanence of genetic change and whether or not we needed to respect the transmission of human life between generations as well as life itself. If there was a difference between the intentional alteration of the gene pool and natural selection, should we prefer choice to chance? Given our growing ability to choose, what were the implications for disabled people. Would they feel discriminated against or devalued if disabilities were generally eliminated from the population. But, argued others, retaining disabilities where cures were available seemed perverse. We looked at the competing rights to know, and not to know, between parents and children. Was there an overriding right to know your progenitors. If so, claimed one participant, some 12,000 children a year in the UK would discover that their natural father was not their actual father.
We looked at the debate on reproductive cloning where most of us thought it should not be permitted on ethical as well as practical grounds. We were told that 90% of Canadians had voted against it. There were some who argued that it should not be banned permanently even though there were risks from parental domination of the child and also from compromising the genetic individuality. At a more political level it was suggested that support for reproductive cloning in the UK would have set back the present agreement on therapeutic cloning. There was also a sharp difference of view between those who maintained that the only proper basis for taking decisions on such issues was a rational assessment of the arguments and science involved, and those who believed that intuitive or instinctive reactions to such deep-seated questions also had validity. Proponents of the former view claimed that in order to distinguish intuition from prejudice, arguments and evidence should be adduced. The latter claimed that to ignore intuitive reactions based on centuries of evolution would be unwise. Neither pure mystery nor pure logic were adequate as guides, a combination would be preferable. Notwithstanding several reprises we were unable to bridge the difference. In this context it was claimed that there was no absolute code of ethics. Our species had invented the concept of human rights. Attempts had been made to elaborate a common set of rights which, at the most universal level, were seen in various UN Declarations. These filtered downwards to states and other bodies, but they were in constant evolution.
A number of issues came up in our consideration of the medical issues. We asked ourselves if there might be grounds for prohibiting genetic testing and considered the balance of argument was against this. We thought that people should have the right to information about themselves, and in practice, since many tests were now available from private suppliers, it was impractical to attempt to ban them. But tests could reveal conditions like Huntingdon’s which were untreatable. It was pointed out that tests which revealed conditions about which something could be done were much more widely taken up than those when little or nothing could be. An important consideration was that a test should be accompanied by adequate counselling and explanation about the degree of probability of any disease occurring. Most people did not understand that many tests were only indicative. We noted that there could be a considerable difference in the way such information was passed on, depending whether it was in a state regulated system like the NHS or a private supplier. One participant argued for using phenotypes when conducting diagnostic tests as they were likely to give much clearer results. Some testing for pharmacogenic compatibility seemed to us to be clearly desirable in selecting the most appropriate drug for a particular patient.
We noted that biogenetics had initially come to wide public attention through the use of DNA analysis to help detect criminals. Against the possibility of creating a DNA database for police use were the well known civil liberties arguments. If we were to have a biobank, or as it was now known in France, a biolibrary, there was a feeling that it would be better to make it universal rather than allow the police or other government authorities to put data on it of use for their particular purposes. But in that case we thought it should be hedged about with safeguards such as oversight by independent, trusted figures, transparent etc. There also needed to be clarity about what was being stored, tissue samples or merely DNA fingerprints. We concluded that while there were arguments for and against, the quality of the governance would be decisive.
Choice and consent were thought to be important aspects of the use of genetic testing. On the one hand an example was given of the elimination of an inherited disorder from all the children in a particular community as a result of a voluntary screening project. Would it have been acceptable to achieve this desirable outcome by compulsory screening? Doubts were expressed, although consistency was hard to find. For example, in France, the MMR injection was compulsory on grounds of public health protection while it was not possible to insist on a DNA test for an accused rapist. Others thought that DNA testing was of great benefit to the innocent by establishing conclusively that they were not connected to a crime. It was claimed that the innocence of over 100 prisoners on death row in the USA had been proved in this way. We discussed attempts to restrain research in certain fields as opposed to the scientists traditional guiding principle of curiosity. There was often public concern that if research was permitted, development would surely follow. Concern was also expressed at the inability of most scientists to explain publicly what they were doing. A good deal of approval was expressed for the role of the Human Fertilisation and Embryology Authority. We noted that it had not come easily, there had been a long debate followed by legislation. Decision-making had been taken away from those with the greatest vested interest. It had a lay majority and a lay Chair and was not a body which would easily be captured by particular interest groups. It also had a formal obligation to consult widely before offering advice.
In considering the economic issues we paid particular attention to insurance, GM crops, patent and ownership questions. The link between insurance and genetics was thought to be particularly close since, for the foreseeable future, the main medical use of genetics would be diagnosis and not treatment. Once the information was available, who had a right to know? Some of us thought that it should be private. Others, however, pointed out that both the fact of, and results from, HIV tests had to be declared to insurance companies. And, indeed, same-sex discrimination in insurance was allowed. But total disclosure could result in a class of genetic uninsurables. On GM crops there was a general feeling that opposition was largely based on ignorance and emotion. A comparison was made with attitudes to human-reproductive technologies where opposition also appeared not to be susceptible to rational argument. On the other hand we were told that those working in the biogenetic industry, although confronted daily by ethical issues, approached their challenges with an unbridled optimism that solutions would be found.
On patents, the relatively optimistic view emerged that most problems could be seen as transitional. The University of Wisconsin’s blanket patent on human embryonic stem cells had caused problems for the scientific research community who might not wish to face a legal challenge in developing specific aspects of the general technology. Most people thought, however, that the problem would be resolved by court cases brought on the grounds of dubious utility or doubtful non-obviousness or through material transfer agreements. The Wright Brothers had, after all, not been successful with their patent on powered, heavier-than-air flight. But, claimed others, the problem remained that, unlike other technologies, it was hard to invent around the gene. National Academies were looking into the question of patents. Concern was also expressed about the effect of the commercial benefits accruing to universities from the patenting of their research. The spur of “curiosity” and the free exchange of scientific information were being superseded by commercial confidentiality which made universities behave more like corporate entities. An advantage of the patent system, it was suggested, might be that it gave an opportunity, on a case by case basis, to take a view on the overall advantages and disadvantages of a particular treatment. Ownership issues relating to human tissue were also discussed. The straightforward view was expressed that this should not be treated differently from any other transaction. Provided the donor or vendor were clear about what was happening and the contract did not specify otherwise, no rights to the tissue should be retained once the transaction was complete. But this was contrasted with recent legislation and procedures introduced in Britain following abuse in certain hospitals.
In looking back at the ground we had covered, a number of points were made. The view was expressed that in some areas of the debate, such as GM crops, fear and superstition were still strong and difficult to deal with by rational argument – “It is hopeless to reason a man out of something which he has not been reasoned into”. Cultural influences were also strong. Some countries in the EU wished to ban stem-cell research on religious grounds. To those who had called for policy conclusions from our discussions, the reply was given that, in this area, analysis might well equate with policy. The doubt was expressed that pragmatism would be a sufficient response. While genetics might not be so distinct from other branches of science, the distinctions were important. It was an issue which touched the basic points of our lives and forced us, whether religious or not, to consider our place in the universe. We were dealing with the potential of poisoning the world’s crops or affecting the human species. It was difficult, in these circumstances to know what to be pragmatic about. Genetics could increase the differences between poor and rich and between nations. While information about biogenetics might be widely available, a plea was made for more public confrontation of the issues, in particular for airing the arguments which lie behind the issues and which illuminated the choices. The central question, it was suggested, was the shifting boundary between chance and choice with the latter increasing, and with it the awareness of the intergenerational results of our actions. Two other questions were singled out. The need to discuss openly the implications of giving those in authority in our countries immense power over us as individuals through the recording and storing of genetic information. No society could be complacent about these developments. The insurance problem was also of great importance. How could we steer between bankrupting insurance companies and creating a class of insurance “untouchables”, even in a single payer system. The conference ended with a spirited defence of pragmatism. Surprises were inevitable, as BSE had shown. Technology had consequences which could be even more unpredictable than science. Better, in this view, not to polarise the debate, but to build strong intermediary institutions and give time for ideas to change. The fact that the protagonists concerned came from two countries, one with a written constitution and a history of deep debate about its amendments and the other from a country with an unwritten constitution, was probably purely coincidental.
I am grateful to all those who participated in the conference. The ability to bring our doubts together in civilized conversation was cited by one participant as a distinctive attribute of our society. I am also grateful to the Chairman for the wide knowledge and probing intellect he brought to our discussions which benefited greatly from his guidance. It is an issue to which Ditchley will, no doubt, return in future years.
This Note reflects the Director’s personal impressions of the conference. No participant is in any way committed to its content or expression.
Chairman : Professor Ronnie Dworkin
Frank Sommer Professor of Law and Philosophy, NYU; Quain Professor of Jurisprudence, University College, London (1998); Emeritus Professor, Oxford University; Formerly: Professor of Jurisprudence, Oxford University (1969-98); Author
Professor Florencia Luna
Professor Dr Manfred Stelzer
Department of Constitutional and Administrative Law, University of ViennaBELGIUM
Professor Dr Sigrid Sterckx
Senior Research Fellow, Department of Philosophy and Moral Science, Ghent University, Flanders (Belgium); Professor, Department of General Economics, University of Antwerp; Member, Belgian Advisory Committee on Bioethics; Member, The Flemish Health CouncilCANADA
Professor Abdallah S Daar
Professor, Public Health Sciences and Surgery, University of Toronto; Director, Program in Applied Ethics and Biotechnology, University of Toronto Joint Centre for Bioethics; Member, Human Genome Organization
Dr Paul Kielstra
Deputy Director, 21st Century Trust
Professor Margaret A Somerville
Samuel Gale Professor of Law, Professor, Faculty of Medicine and Founding Director, McGill Centre for Medicine, Ethics and Law
Mr Michael Vandergrift
Director, Health Sciences Policy Division of Health, Canada; formerly: Department Assistant, Minister of HealthFRANCE
Professor Sadek Beloucif
Professor and Chairman, Department of Anesthesia and Critical Care Medicine, Amiens University Hospital, France; Member, European Conference of National Ethics Committee; member, French National Ethics Committee (1999-)IRELAND
Dr Hugh Brady
Head, Molecular Haematology and Cancer Biology Unit, Institute of Child Health, University College London and Great Ormond Street Hospital; Director, Leukaemia Research Fund Centre for Childhood Leukaemia
Professor Brenda Almond
Emeritus Professor, Moral and Social Philosphy, University of Hull; formerly: Member, Human Fertilisation and Embryology Authority (1998-2001)
Professor Peter Andrews
Professor of Biomedical Science, Sheffield University
Dr John Ashworth
Chairman, Barts and The London NHS Trust; formerly: Chairman, The British Library (1996-2001); Director, London School of Economics and Political Science (1990-96); a Governor, The Ditchley Foundation
Dr Amy Berrington
Research Fellow, Epidemology Unit, University of Oxford
Mr Geoffrey Carr
Science Editor, The Economist
Mr Sebastian Cody
Television executive and freelance consultant; proprietor, Open Media (1986-); formerly: journalist, BBC TV, Times & Guardian; editor, “After Dark” (1987-98)
Professor Richard Dawkins
Charles Simonyi Professor, New College, Oxford University, Author
Professor John Harris
Sir David Alliance Professor of Bioethics, University of Manchester; member: Ethics Committee of the British Medical Association (1991-97 and 1999-); Human Genetics Commission; Founder Director, International Association of Bioethics; broadcaster and author
Professor Sir Bob Hepple QC FBA
Chairman, Nuffield Council on Bioethics; Emeritus Master, Clare College; Emeritus Professor of Law, University of Cambridge
Professor Steve Jones
Professor of Genetics, Galton Laboratory, University College London
Mr Alastair Kent
Director, The Genetic Interest Group
Ms Suzi Leather
Chair, Human Fertilisation and Embryology Authority
Professor Conrad Lichtenstein PhD FRSA
Professor of Molecular Biology, School of Biological Sciences, Queen Mary, University of London
Mr John Lotherington
Director, 21st Century Trust
Sir John Maddox
Formerly: Editor, Nature (1966-73) and (1980-95); Member, Genetic Manipulation Advisory Group (1976-80); Director, The Nuffield Foundation (1975-80); Author and Broadcaster
Professor Theresa Marteau
Professor of Health Psychology, Psychology and Genetics Research Group, King’s College, London
Dr Stephen Minger
Lecturer, Biomolecular Sciences, King’s College London
Dr Michael Morgan
Formerly: Chief Executive, The Wellcome Trust Genome Campus
Dr Matt Ridley
Freelance Journalist and author; formerly: wildlife biologist, University of Oxford (1979-83); Washington correspondent and American editor, The Economist (1984-91); member, Programme Committee, The Ditchley Foundation; a Governor, The Ditchley Foundation
Dr Pankaj Sharma MD PhD
Consultant Neurologist, Hammersmith Hospitals and Imperial College, London; Chair, Fulbright Alumni Association
Professor Glyn Stacey
Head, Cell Biology and Imaging Division, NIBSC; Director, UK Stem Cell Bank
Sir Crispin Tickell GCMG KCVO
Chancellor, University of Kent at Canterbury; Director, Green College Centre for Environmental Policy and Understanding; Convenor, Government Panel on Sustainable Development; Ambassador to Mexico (1981-83); Permanent Secretary, Overseas Development Administration (1984-87); Permanent Representative to UN (1987-90); Warden, Green College, Oxford (1990-97); President, Royal Geographical Society (1990-93); author; a Governor and member of Council, The Ditchley Foundation
Dr Geoff Watts
Broadcaster, Leading Edge, BBC Radio 4; Media Consultant; formerly: Presenter, Science Now and Medicine Now; member, Government’s Human Genetics Commission; Fellow, Academy of Medical Sciences; Author
Professor Andrew Wilkie
Nuffield Professor of Pathology, Weatherall Institute of Molecular Medicine, University of Oxford; Honorary Consultant in Clinical Genetics, Oxford Radcliffe Hospitals, NHS Trust
Mr John Wyn Owen CB
Secretary, The Nuffield Trust (1997-); Honorary Fellow, Faculty of Public Health Medicine; Fellow: University of Wales Colleges; Australian College of Health Service Executives; Royal Society of Arts
UNITED STATES OF AMERICA
Professor Robert Burt
Bioethicist, Yale Law School
Dr Elizabeth D Capaldi
Vice Chancellor and Chief of Staff, The State University of New York; formerly: Provost and Professor of Psychology, University at Buffalo, SUNY; provost, University of Florida (1996‑99)
Mr Thomas G Donlan
Editor, Editorial Page, Barron’s National Business and Financial Weekly (1992-); Washington Editor (1981-91); author
Dr Winfred M Phillips
Vice President for Research, University of Florida (1999-); formerly: Dean of the Graduate School, University of Florida (1999-2004)
Professor Eugene Skolnikoff
Emeritus Professor of Political Science, Massachusetts Institute of Technology (MIT) (1965-); Chairman, UN University Institute for New Technology; Science Advisor, White House Staff to Presidents Eisenhower, Kennedy (1958-63), Carter (1977-81); Author
Mr Raun Kupiec
Associate Director, Regulatory Affairs Europe, Genzyme Europe; formerly: Principle Associate, Biomedical and Regulatory Compliance, European Regulatory Affairs