06 April 1995 - 08 April 1995

Advances in Human Genetic Science - Issues for Public Policy

Chair: Professor James D Watson

This conference represented a foray by Ditchley into a field of great complexity, rapid change and wide-ranging practical and ethical uncertainty. We had however recruited a group of exceptional diversity and distinction to tackle it; and we managed the tackling in a spirit of open collective inquiry which generated significant light yet no untoward heat.

Scientific advance had, we realised, yielded a massive deepening in understanding of the chromosomal patterns which set the “programme” for the human individual. This understanding hugely extended our abilities to diagnose disease, to identify its carriers, to recognise propensities and eventually in some degree to modify the “programme” itself. The resulting new opportunities inescapably opened up also new problems, for example about whether we ought to control whatever we found ourselves able to control, and what were the implications of ascertaining life-important facts about which it might be, we either could or should do nothing. Precedents already existed for such problems; but the prospective scale, and the rate of its growth, was likely to pose them in what amounted to a transformed order.

Not all the problems were of immediate urgency - some of the possibilities for outcome-changing intervention popularly conjectured lay at least a long way ahead, and practical policy needed to distinguish likely timescales. It was important moreover to recognise that the realities were highly complex; with the exception of the comparatively rare incidence of single-gene disorders (and even those might be not unaffected by environment) particular elements of genetic make-up did not lie in a simple causative relationship with health or behavioural outcome - the genetic interactions were themselves complex, and they further interacted with a great diversity of external factors. Disease-related genetic characteristics therefore for the most part indicated no more than tendencies - predisposition rather than predestination - and knowledge of them should be seen less as a predictor than as an aid to risk management. It was necessary also to have in mind that the scientific knowledge was itself in continuous change, not always in a linear way; the impending completion of the human genome project would be no more than a systematic base-laying.

We acknowledged nevertheless that even propensity falling well short of prediction posed hard issues for action. The clearest field of example was perhaps intervention in pregnancy. The possibilities for genetic modification of embryos were not yet of widespread importance, not least because the interactive complexities still much exceeded safe understanding; but the range of available knowledge bearing upon the option of termination, once admitted, was already much expanded. Questions arose accordingly of whether or when the right to acquire such knowledge - about disease, say, or behavioural inclination - or the right positively not to acquire it should be circumscribed, and what concepts and criteria might thereafter bear upon the use of the knowledge in termination decisions. We noted significant albeit not uniform differences of approach between the two sides of the Atlantic, the Western side mostly stressing individual choice and therefore abortion, on demand, the Eastern more ready, at least in theory, to limit choice on societal or shared-ethical grounds. Even on the latter view, however, enhanced knowledge of potential imperfection raised the prospect of much-increased prenatal selection. We noted with dismay reports of the practical effect in India and China of the ability to detect gender before birth; and the term “eugenics” increasingly loomed over our discussion. Aside from a general awareness of its malign historical overtones, our attitudes to the underlying concepts differed. Some participants challengingly asked what precisely was wrong with progressively improving the quality of the human race, whether by selective abortion or by genetic adjustment when (as must eventually be expected) this became more widely possible.

Various responses were proffered at a practical level - the uncertainties of aggregate social outcome if individual intervention ran free, for instance; the dangers of further stigmatising the remaining groups subject to the handicaps or other perceived imperfections which cumulative choice was purporting to weed out; the reactions of disadvantaged children to parents who had renounced knowledge or action upon it. But deeper concerns adduced the threat to human diversity; to pride in achievement; to our sense of owning our own identity and not having had it selected or manufactured by others; and to our acceptance of the luck of the draw alongside equality of right. Would not our moral frameworks be crucially shaken - far more than by Darwin or Freud, for genetic knowledge could be used to bring about change - if we could no longer take human endowment as given? What features constituted normality or desirability, and by whose judgement?

We found no ready answers to such questions, though we perceived that whether they arose at all turned on a yet more fundamental dichotomy of approach, too deep or demanding for our weekend to address directly: whether, as the trend in many developed societies seemed increasingly to assume, it was legitimate to intervene wherever intervention was possible, provided that good or at least no harm resulted; or whether interventions to decide what people, of what sorts, should be born (as, rather similarly, when people should die) crossed a special boundary which for our continuing humanity should remain inviolate.

We looked for working principles to guide the acquisition and use of genetic knowledge. It seemed clear that individual choice and confidentiality were crucial, though we were not at one on whether these should be in all conceivable circumstances overriding precepts; and we knew that in any event community pressures might bear powerfully upon decisions. We were agreed however that the state must not discriminate amongst its citizens - for example in the provision of health care or social security - according to whether or not it approved of the past decisions of individuals in these respects.

For reasons of time we touched hardly at all on the consequences of enhanced genetic knowledge for families, and only relatively briefly on those for social policy. Given the key distinction between propensity and predetermination, almost all of us agreed that individual responsibility was not dissolved; quite aside from the complicating effects of environmental factors, a gene predisposing to aggressive reaction was not a gene compelling to criminal acts. It would therefore be as wrong to accept that genetic characteristics exempted from blame as it would be to use them as a ground of pre-emptive action against individuals. But we did recognise risks that individual perceptions of responsibility might be further weakened (on an analogy, for instance, with pre-menstrual tension), and also that some parts of the political spectrum might be tempted to argue for less effort or expenditure on social policies directed to improving environmental and educational influences on behaviour.

We turned a wary eye upon some of the business implications of the scientific advance. The legitimacy and scope of patenting was already a live issue. Some participants felt instinctively that the concepts of patenting were basically inappropriate in this field; but from a technical and legal standpoint we acknowledged that there was nothing inherently unmanageable about their application, and we noted that if it were wholly disallowed the incentive to useful advance in knowledge would be weakened. Beyond this, we found difficulty in seeing what working criteria could guide the exclusion of particular genes from patentability on an argument of importance (as distinct from principle). It was strongly argued however that the granting of patents had drifted too far - that a firmer insistence on a genuine innovative component (invention, not just increasingly- automated discovery) was needed; that open-ended patents extending to product or use applications not yet identified were unacceptable; and that the use of reagents for genuine research purposes should be left free.

Insurance business, we realised, might be considerably affected by the availability of genetic information. Even if insurance companies did not choose or were not permitted to seek this, it might well be volunteered by customers seeking lower premium rates on the ground of “favourable” profiles; and differentiation might be forced into the system by that route unless specifically prevented - which only external regulation, not market forces, could ensure. Many of us were disposed - as, we gathered, might be elements of the insurance industry itself - in favour of some such regulation, in order to prevent progressive segmentation of the market and to preserve reasonable spread and sharing of risk. The issue was in any event in need of early addressal, especially in societies where health-care rested primarily upon a basis of insurance.

Our discussions had thus noted patenting and insurance as areas where public regulation had a part to play. But these were specialised and in a sense secondary aspects. What wider systems of control, if any, could or should be envisaged for the general field of genetic research and its applications? There seemed a strong sense that “anything-goes” could not be right, and it was not reasonable to expect professional ethics alone, still less the private-sector workings of the market, to undertake complex interest-balancing on society’s behalf. We found it hard however to pin down just what should be limited, and by what mechanisms. We doubted whether it was realistic or apt to attempt to constrain the advance of knowledge itself, as distinct from particular applications or particular methods of research. Beyond that we were uneasy about the capability of formal legislative systems - slow-moving, hard to change and dependent upon imperfect grasp by lawmakers of complex scientific concepts, especially amid constant shifts in knowledge and understanding even by scientists themselves - to maintain a satisfactory framework; some of the edicts now in place already showed up poorly under the test of practice. The difficulties of popular comprehension - especially about uncertainty and risk - were a recurrent theme in our discussions; we noted the need for careful effort by the expert communities in general dissemination as well as in specific counselling, and also for better general and professional education - including awareness of the ethical issues - at all levels.

The search for control systems that would be both knowledgeable and flexible led many of us to like the idea of some sort of supervising commission to act for society in interpreting, alerting and advising on prospects and dangers and on how they should be dealt with - for example, for which categories of disease should the option of testing be publicly provided? We did not however plumb the full implications of such a device (for example in respect of democratic accountability) nor the manner in which - as would be essential - its working might be underpinned by or geared to some law-based capability for enforcing the public interest. We did note the desirability of international discussion and information exchange (general international regulation being plainly beyond current reach for both structural and cultural reasons).

We came away with few if any answers tidily agreed, and time had largely squeezed out important aspects like employer/employee implications and whether unrestricted exploitation of the new knowledge might deepen the gulf between rich and poor within and among nations. We had a shared sense of complex problems looming, near and far. But inter-disciplinary exchange and awareness of cultural difference, even within the Western world, had for most of us clarified that sense, as a step towards wisdom. The consoling envoi perhaps was that amid all the challenges and perplexities on which we had inevitably concentrated there remained wide-ranging opportunities for human benefit.

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 James D Watson
Director, Cold Spring Harbor Laboratory


Professor Tom Campbell
Professor and Dean of Law, The Australian National University, Canberra

Sir Roger Bannister CBE DM FRCP
Honorary Consultant Physician, National Hospital for Nervous Diseases, London; Honorary Consultant Neurologist: Oxford Regional and District Health Authorities  

Professor Martin Bobrow CBE
Prince Philip Professor of Paediatric Research, United Medical and Dental Schools of Guy’s and St Thomas’s Hospitals, University of London

Mr Roger Bowley
Executive Director/General Manager (Central Services) and Secretary, The Equitable Life Assurance Society           

Mr John Cornwell
Senior Research Fellow, Jesus College, and Director, Science and Human Dimension Project, University of Cambridge.

Professor Kay E Davies
Medical Research Council (MRC) External Staff, Institute of Molecular Medicine, Oxford

Rev Professor Gordon Dunstan CBE       
F D Maurice Professor of Moral and Social Theology, King’s College, London

Mr Graham Hart CB
Permanent Secretary, Department of Health       

The Baroness Hooper
Life Peer (Conservative) 

Professor Ian Kennedy
Professor of Medical Law and Ethics (1983-), Director, Centre of Medical Law and Ethics (formerly Centre of Law, Medicine and Ethics) (1978-), King’s College, London

Professor Dame June Lloyd MD FRCP    
Emeritus Professor; Professor of Child Health, St George’s Hospital Medical School, London University

Mrs Caroline M Miles
Ian Ramsey Fellow, St Cross College, Oxford        

The Rt Hon Sir Patrick Nairne GCB MC
Retired as Master, St Catherine’s College, Oxford             

Dr George Poste
Chairman, Research and Development, SmithKline Beecham Pharmaceuticals      

Mr David Shapiro
Executive Secretary, Nuffield Council on Bioethics            

Baroness Warnock DBE
Life Peer (Cross Benches)

Professor Sir David Weatherall FRS        
Regius Professor of Medicine, University of Oxford

Dr Tom Wilkie   
Science Editor, The Independent

Professor Patricia Baird MD CM FRCPC FCCMG
Paediatrician and human geneticist
Dr Margaret A Somerville AM FRSC
Professor, Faculty of Medicine, Gale Professor of Law and Founding Director, McGill Centre for Medicine, Ethics and Law, McGill University, Montreal            

Monsieur Jean-Jacques Duby

Scientific Director, Union des Assurances de Paris
Professor Alain Pompidou
Professor of Histology, University Rend Descartes, Paris

Dr Knut Bauer

Director, Department of Bioethics, Ministry of Science, Research and Technology, Bonn
Dr Klaus Wild
1st Counsellor (Scientific Affairs), Embassy of the Federal Republic of Germany, London

Professor Lori Andrews

Professor of Law, Chicago-Kent College of Law, Illinois Institute of Technology
Ms Sharon Begley
Senior Writer, Science department, Newsweek
Dr Baruch S Blumberg
Senior Adviser to the President and Fox Chase Distinguished Scientist, Fox Chase Cancer Center, Philadelphia
Professor Mario R Capecchi
Investigator, Howard Hughes Medical Institute, Salt Lake City, Utah; University of Utah
Professor Ronald Dworkin FBA
Professor of Jurisprudence, Oxford University
Dr Philip Goelet
Chairman of the Board of Directors and CEO, Molecular Tool
Professor Patricia A King
Professor of Law, Georgetown University
Mr George N Lindsay
Of Counsel (former Presiding Partner and former Resident Partner (London)), Debevoise & Plimpton, New York
Mrs Mary Lindsay
Vice Chair, Board of Directors, Cold Spring Harbor Laboratory
Professor Hamilton Moses III MD
Professor of Neurology and Neurosurgery, School of Medicine, University of Virginia
Dr Robyn Y Nishimi
Senior Associate and Project Director, Congressional Office of Technology Assessment
Professor William B Provine
Cornell University, Ithaca, New York
Professor Allan Rosenfield MD
Columbia University: Dean, School of Public Health, Joseph R DeLamar Professor of Public Health, Professor of Obstetrics and Gynaecology
Dr Valerie P Setlow
Director, Division of Health Sciences Policy, Institute of Medicine, National Academy of Sciences