Background to the establishment of the Genetics Group

• Genetics Group: members and terms of reference
• Bibliography of books and papers on the subject of genetics and insurance
• Links to other Genetics sites

(The Genetics Group was disbanded in 2006)

On 25 September 1996 the profession participated in a joint discussion meeting with the Royal Society on Human genetics - uncertainties and the financial implications ahead. A record of the discussion was published by the Royal Society in Philosophical Transactions: Biological Sciences Volume 352 (27 August 1997).

The actuarial content of the document was published as a paper for the Institute Sessional Meeting held on 19 May 1997: Human genetics and financial services (Wilkie, Daykin, Le Grys, Macdonald, and Ross). In addition, John (J) Lockyer, Chairman of the Life Board's Genetics Working Party, agreed that a 'first rough draft' of a paper being produced by his working party could be made available to those attending the Sessional Meeting. At the Sessional Meeting, Peter Turvey suggested the establishment of an inter-professional forum to debate the issues further (this suggestion was subsequently taken up - see below).

During 1997 both the ABI and the Human Genetics Advisory Commission (HGAC) were active on the issue of genetic testing and insurance, and the profession contributed to the debate by commenting on the work of both organisations. In parallel with its contribution to the ABI and HGAC, the profession also drafted its own genetics 'position statement' to assist spokespersons in the event of a request for comment from the media; the statement was not formally published. The work of the ABI and the HGAC resulted in the publication in December 1997 of two documents:

• Genetic Testing - ABI Code of Practice
  
  
• HGAC report on the Implications of Genetic Testing for Insurance

In mid 1997 a meeting of interested parties (Geoff Brown, Desmond Le Grys, Robin Snelson and Peter Turvey) considered further Peter Turvey's suggestion for a forum. In late 1997 the Wider Fields Board took ownership of the work being done by this group and established a formal working party. After publication of the HGAC report it became clear that this document provided an ideal spring-board for a forum, since it called for increased collaboration between geneticists, clinicians, actuaries and others, and for "widespread consultation between the various groups involved in this very complex area". The HGAC report became, therefore, the focus for the Working Party's thinking. The Forum Working Party continued to meet during 1998, Chris Daykin becoming its Chairman in February.

A final version of the Life Board Working Party's paper was published for the International Congress of Actuaries in June 1998 as Genetic Science and its Implications for Life Insurance (Lockyer (J), Brett, Hannington, Lockyer (JAN), Macdonald and Woods).

Following informal consultation with key players during 1998, a formal meeting to discuss the concept of a 'Genetics and Insurance Forum' was held on 27 November. In view of the considerable support expressed at the meeting for the profession's initiative, it was decided to establish the forum (UK Forum for Genetics and Insurance) immediately without further consultation. The TOR for the Forum are as follows:

• bring together medical and statistical research on the extra risks to people with conditions to which there is a significant genetic predisposition
• consider the value of the results of genetic tests in the assessment of people's insurability
• encourage further research in these areas, and multi-disciplinary discussion and exchange of information
• consider how best to provide protection against these risks, and how these may best be shared between the public and private sectors
• consider how best to balance the rights of individuals against the social costs
• investigate how our understanding of these issues is likely to evolve in the light of further discoveries
• consider how society might best prepare and adjust to such new knowledge
• communicate its findings on a regular basis

In the run up to the establishment of the forum, it became clear to the Wider Fields Board that, in order for the profession to contribute effectively to the Forum, it should develop a greater expertise in the field of genetics and a better understanding of the relationship between genetics and insurance. Therefore, it set itself an objective for 1998/99 to establish a cross-Board working party to develop such an expertise.

In his Presidential address in October 1998, Paul Thornton said " Advances in the field of genetics will prove to be among the most far-reaching developments of the 20th Century. In the grand scheme of things they will have a profound effect on the demographic aspects of our work. Our focus has so far been limited to the implications of for insurance underwriting. We now need to devote more research to working with other disciplines on how these advances will impact on health provision, longevity and long-term care requirements.

At a subsequent meeting of the Faculty and Institute Management Committee in November 1998, FIMC noted that Chris Daykin had agreed to chair a working party to develop the profession's involvement in the field of genetics. FIMC requested that the Terms of Reference for the working party be widely drawn so as to lead to consideration of the implications of genetic testing for all areas of actuarial activity.

In July 2000 the Wider Fields Board was disestablished and replaced by two new Boards, one being the Social Policy Board (SPB). The Working Party has been renamed the Genetics Group and reports to the SPB. David Paul is the Group's representative on the Board.

Links to other genetics sites

Genetics and insurance

• UK Forum for Genetics and Insurance
  A group founded by the ABI, the Assurance Medical Society, the British Society for Human Genetics, the Consumers' Association, the Continuing Care Conference, the Faculty and Institute of Actuaries, the Genetics Interest Group, the Nuffield Council on Bioethics, the Royal Society and the Wellcome Trust. The mission of the Forum is to analyse the implications of advances in genetic knowledge for insurance in all its forms and to serve the public interest by reporting on its findings.
• Genetics and Insurance Research Centre (GIRC)
  In the Department of Actuarial Mathematics and Statistics at Heriot-Watt University, Edinburgh, set up in 1999. The GIRC's remit is to develop mathematical and actuarial models to estimate the costs of genetic knowledge to individuals, to insurers and to service providers.
• Association of British Insurers
  The trade association for insurance companies; represents virtually the whole of the UK insurance company market.

Genetic research

• British Society for Human Genetics
  The largest forum for professionals involved in human genetics in the UK, both as a clinical service and as research.
• Genetical Society
  A "learned society" whose membership of nearly 2,000 consists of most of the UK's active professional geneticists, including teachers, researchers and students. Industry and publishing are also well represented in the membership.

Bioethics, and public education

• Genetic Interest Group
  A national alliance of organisations with a membership of over 120 charities which support children, families and individuals affected by genetic disorders. Its primary goal is to promote awareness and understanding of genetic disorders so that high quality services for people affected by genetic conditions are developed and made available to all who need them.
• Hastings Center
  Claims to be the oldest and most prestigious bioethics research and education centre in the world.

Government sponsored sites

• Human Genetics Commission
  The UK Government's advisory body on how new developments in human genetics will impact on people and on health care. Its remit is to give Ministers strategic advice on the "big picture" of human genetics, with a particular focus on social and ethical issues. The HGC first met in February 2000. This site provides basic information about the Commission and gives readers an opportunity to comment or ask questions on its overall work.

General scientific/medical research

• The Royal Society
  The UK national academy of science, founded in 1660.
• The Wellcome Trust
  The world's largest medical research charity.