6.3. The UK Human Genetics Commission

pp. 87-90 in Bioethics and the Impact of Human Genome Research in the 21st Century

Author: Philip Webb (Human Genetics Advisory Commission, UK)

Editors: Norio Fujiki, Masakatu Sudo, and Darryl R. J. Macer
Eubios Ethics Institute

Copyright 2001, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.
The Human Genome Project

 We are living in interesting times. Daily we are faced with new challenges and the ever-increasing pace of scientific and technological development. Perhaps one of the most exciting developments is the completion of the full sequencing of the Human Genome and the benefits it promises for humankind. Greater understanding of how our bodies function, how our genes contribute to the diseases we suffer and how we age, should lead to major advances in the way in which we deal with disease and may affect our attitudes to ageing, reproduction and how we live our lives.

Promises of Medical Benefits

 There are many promises of new areas opening up which offer us the potential for doing things in new ways. We can expect in the near future to be able to both treat disease more effectively and identify it earlier. New targeted drugs and therapies will be developed and tailored to an individual's genetic profile resulting in fewer unwanted side effects. Developments in genetic testing will enable us to identify genetic pre-dispositions to disease while the ability to use genetic data in epidemiological research offers the hope of understanding relationships between genetic, environmental and lifestyle factors in causing disease.

Ethical, Legal and Social Implications

 However, many of these developments raise important ethical, legal and social issues. It is important that in these times of rapid change, there is an effective framework of regulation and guidance against which advances may take place to the benefit and in the interests of all of us and in a way that sets the right context for the future.

Importance of Public Acceptability

 We also need to ensure that scientific advances do not race away from social and ethical debate or cross boundaries of public acceptability. Scientists, industry and Government have all learned the hard way that people cannot (and should not) be forced to accept something over which they have major concerns.

Public Concerns

 While people are likely to find new developments in human genetics much more acceptable where they have a medical or health application, many people do find the idea of such research a bit escary'. They often feel that there is something about their DNA that defines them uniquely and that making use of that person's DNA for research may be viewed by some as tampering with something that is the essence of all human life and that defines our humanity.

There are also questions about whether children should be tested for genetic disorders which they later may have preferred not to know about if given the choice and concerns about the possible effects of some types of genetic testing or gene therapy on subsequent generations. Others feel that extensive genetic testing may result in widespread discrimination and fear the development of an underclass excluded from both insurance and employment by the results of their own genetic tests or even those of others in their family.

While most people, when they think about it, would accept that we are more than our genes, such concerns are nevertheless real for many. People may also be worried about who has access to this information about eme' and what they can do with it. In particular, many seem suspicious of the motivations of ebig business' particularly in relation to issues such as insurance, patenting and control over our genetic data.

Patients' Needs

 However, it must be remembered that there are also large numbers of people who are affected by debilitating and often untreatable diseases who are desperate for these new advances to materialise as fast as possible.

What is clear is that public views, both concerns and desires for health solutions, must be taken into account.

Distrust from past problems

In the UK, the problems of BSE and other high profile issues such as GM food, have severely damaged the relationship between science, Government and the public and resulted in the development of a deep public distrust of industry, scientists, politicians and even, (in the wake of stories about hospitals keeping tissues and organs without adequate permission), to some extent the medical profession. Many other countries have also seen a similar decline of public confidence in professionals, and others will as they develop further .

The Government Review

 Last year the UK Government carried out a public consultation on developments in the biosciences and also reviewed the advisory and regulatory framework for biotechnology. The public consultation found that:

a) people generally have a low awareness of scientific and technological advances but do understand the basic principles of biology and genetics.

b) although people see medical advances as being of the greatest benefit, they are suspicious of all advances in biotechnology where they cannot identify applications that are of direct benefit to humans.

c) people see effective regulation as being extremely important because of concerns over the safety of new developments. At the same time many feel that they do not know enough about existing regulations.

d) a robust regulatory system that is transparent, regularly reviewed and incorporates random checks is essential in order to win public confidence

e) Government advisory groups are generally a trusted mechanism for decision-making but membership should be broadly based. Scientists and healthcare professionals are seen as particularly important contributors to decision-making.

f) there is widespread demand for as much public information as possible and again Government advisory groups, scientists, healthcare professionals and consumer and environmental groups would be trusted to provide this information. The media, retailers and industry were not trusted.

Conclusions of the Regulatory Framework Review

 The review concluded that the then current arrangements were:

Need for a new approach

 The Government concluded that a new approach was needed and decided to set up a new, comprehensive, strategic advisory structure for biotechnology which took much greater account of the views of the public, environmentalists, ethicists, the industry, medical practitioners, patients and consumers. As a result the Human Genetics Commission and its sister body the Agriculture and Environment Biotechnology Commission (AEBC) were set up.

The Role of the HGC

 The role of the HGC is to consider the potential impact of developments in genetics for humans and healthcare - in particular the ethical, legal and social aspects of such developments.

Broad Membership

 This is reflected in the wide range of disciplines and backgrounds from which the membership of the Commission has been drawn including ethics, law, industry, patients, consumers, social scientists, geneticists and other healthcare professionals.

I was particularly pleased to be appointed to the HGC, having previously served for over three years on the Advisory Committee on Genetic Testing. When that body was formed in 1996, there were many comments about how clever the Government had been in selecting a name that was to be abbreviated to ACGT, the letters that represent the four bases found in DNA. I believe however that it was more of a random event rather than something that was carefully planned by Government Ministers! As well as being a member of HGC, I also Chair the Sub-group on Genetic Testing that considers the technical, social and ethical impacts of such testing.

What will the HGC do?

 The Human Genetics Commission has been asked to look at the "big picture" of where developments in human genetics are heading and what regulatory and advisory frameworks will be required both now and in the future. Because of the international nature of science, industry and indeed government, the HGC will need to take account of developments in research, new applications and changes in regulation at international as well as at national level.

How will the HGC carry out its work?

 I am particularly keen that the way in which the HGC carries out its work is as open and inclusive as possible. Only by doing so can we hope to carry out our work with the confidence of the public.

As part of this process the HGC provides:

A crucial part of the work of the HGC in developing advice is:

Wider Involvement In addition to taking full account of the views of well-established stakeholder groups, we are particularly keen to identify ways of reaching beyond these to try to engage a wider public.

The HGC Workplan

 What sort of questions is the Commission considering in its work? After much discussion and public consultation we have agreed what the main issues are for the HGC to look at.

Top of the list is the storage, protection and use of genetic information. This will form the main thrust of the work of the HGC over the next 18 months or so. There have been a number of initiatives worldwide to develop large scale genetic databases. Probably the most widely publicised is the the one which has been set up in Iceland. Such databases have the potential to be particularly valuable where they are linked to a population's medical records. In the UK there is currently a proposal for a database of tissue samples from a cohort of up to half a million people aged between 45 - 65 which would be linked to their medical records. This has the potential, over time, to provide an enormous amount of valuable information about both environmental and genetic factors affecting disease and offers the possibility of many new routes to treatment and prevention. However, such initiatives do raise important ethical, legal and social issues particularly in relation to informed consent, confidentiality and access to information. The HGC will want to ask questions such as:

Other areas that the HGC has identified that it wants to look at include:

These are the kind of issues that HGC will need to address. Our role is to look beyond individual issues and seek to provide advice on fundamental principles against which advances in genetics should take place. We will be scanning the horizon to gauge when future developments are likely to materialise so that we are involved from the very earliest stages in helping to shape the way they are addressed and introduced.

What we want to achieve

 Our aim is for the Human Genetics Commission to make a valuable contribution to the development of a regulatory and advisory structure that safeguards society while enabling it to benefit from many exciting new advances in genetics. I believe that this can be achieved through wide public consultation and transparent working, by keeping the public informed about what is going on and involving them in the decision-making process and through working closely with others organisations, in the UK, Europe and the wider international community, who are also considering these sorts of questions.

Please send comments to Email < asianbioethics@yahoo.co.nz >.

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