Select Committee on Science and Technology Fifth Report


The Science and Technology Committee has agreed to the following Report:—



  1. In 1995 our predecessor Committee published a wide-ranging inquiry into Human Genetics, which expressed concern about the use of genetic test results by insurance companies in assessing premiums.[5] Since that time there have been significant developments both in the science of genetics, most notably the mapping of the human genome, and the applications to which it has been put. Many insurers have continued to use genetic test results for the assessment of risk, and public awareness of this was heightened in October 2000 when the Government's Genetics and Insurance Committee (GAIC) validated the use of the test for Huntington's Chorea.[6] In December 2000, we decided to hold a short inquiry to examine the use made by insurers of genetic test results, their relevance and reliability, and their wider consequences for research and patient care.

2. During the inquiry, we have held two oral evidence sessions: the first with Professor Martin Bobrow, Head of the Department of Medical Genetics at Cambridge University; and the second with representatives of three insurance companies - the Co-operative Insurance Society, the Norwich Union and the Prudential. We have received 37 written memoranda, including sixteen from insurers, six from those representing researchers and four from groups representing patients. We would like to thank our specialist advisers, Professor Derek Burke, former Vice-Chancellor of the University of East Anglia, and Professor Michael Elves, former Director of the Office of Science and Educational Affairs, Glaxo Wellcome plc, for their very valuable assistance during this inquiry.

3. The Committee visited the Genome Campus at Hinxton Hall, near Cambridge on 6th February 2001, and met some of those working at the Sanger Centre, the European Bioinformatics Institute and the UK Human Genome Mapping Project Resource Centre. The visit was most helpful in providing background information to the inquiry.

4. The importance of the issue is reflected in the number of bodies currently examining this subject. These include the Human Genetics Commission (HGC), who are undertaking an extensive public consultation exercise; the Nuffield Council of Bioethics, who have convened a working party to look at the ethical issues arising from research in behavioural genetics;[7] and the House of Lords Select Committee on Science and Technology. The latter body is pursuing an inquiry into the general issues arising from the development of human genetic databases.[8] We look forward to reading their findings and those of the HGC.


5. We begin by defining some terms used by those involved in the field of genetics and insurance.


  • Gene: a discrete unit of inherited information.

  • Genome: the complete DNA sequence of an organism.

  • Genotype: the set of genes that an individual possesses; it usually refers to the pair of alternative forms of genes (alleles) which an individual has at a given region of the genome that determines a particular trait or disorder.

  • Single gene disorders: an inherited disease caused by an abnormality in a single gene.

  • Multi-genic conditions: conditions that involve the combined effects of genes, which determine susceptibility to develop a clinical condition.

  • Single Nucleotide Polymorphisms (SNPs): variations between individuals at the position of a base pair (or single nucleotide) in the genome. At present 1.42 million SNPs have been found in the human genome and they occur every 1,000 base pairs. They are the most common genetic variation.


  • Family history: information obtained from individuals regarding the incidence of a disease or condition in close relatives, and the cause of their death if appropriate.

  • Insurance: it should be noted that, in this Report, we refer mainly to life assurance, but other types of insurance, most notably critical illness, income protection, long-term care and permanent health are also affected.


  • Genetics and Insurance Committee (GAIC): Government regulatory committee, set up to evaluate the scientific and actuarial relevance of genetic tests proposed for use by the insurance industry in setting premiums.[11]

  •  Human Genetics Advisory Commission (HGAC): No longer in existence, between 1996 and 1999 it offered the Government independent advice on issues arising from developments in human genetics.

  • Human Genetics Commission (HGC): Government's advisory body on how new developments in human genetics will impact on people and health care.[12]

1995 Report

6. In July 1995 our predecessor Committee published its Report, Human Genetics: the Science and its Consequences, after a thorough inquiry involving nineteen oral evidence sessions and 131 written memoranda.[13] It was a wide-ranging and comprehensive Report, which tackled an extensive number of topics arising from the developments in genetics occurring at that time, including: genetic research in the UK; clinical and industrial implications; the need for free and informed consent of volunteers taking part in genetic screening; the potential for discrimination and human rights abuses; counselling; gene patenting (now an extremely controversial issue) and the need for a Human Genetics Commission to monitor developments and give advice to Government (four years prior to its actual establishment).

7. On the issue of insurance, the Committee suggested that it would be possible to find a way for insurers to protect themselves and for as many people as possible to obtain insurance.[14] It was surprised that the ABI felt that "the use of genetic information in insurance is limited and raises no new problems"[15] and drew attention both to the risks of adverse selection (whereby those with genetic diseases are more likely to insure themselves than others) and to the potential creation of a group unable to obtain insurance. In conclusion, the Committee recommended that "the insurance industry be allowed one year in which to propose a solution acceptable to Parliament, and that if it fails to do so a solution should be sought, by legislation if necessary.".[16]

8. In its Response to the Committee, the Government confirmed that it would keep in touch with developments in the area, but could not see any widespread problems at that time.[17] It stated that "the Government does not believe that legislation would be appropriate now or in the foreseeable future.".[18] Nor did it believe that a deadline should be imposed on the insurers for their response, but rather that the insurance industry could be expected to develop its own code of practice. It also thought that a Human Genetics Commission was unnecessary.

9. In a follow-up Report on the Government's Response in 1996, the Committee expressed its regret that the Government had ignored its chief concern, that the use of test results might lead to significant differentials in insurance pricing, and that the Response might actually have reduced the urgency with which insurers were developing their own code of practice.[19] Subsequently, the Government did agree to another of the Committee's recommendations, however, that a body be appointed which could offer "a timely and independent view"[20] on genetic testing. The Human Genetics Advisory Commission (HGAC), though not the statutory body our predecessor Committee had recommended, was established in 1996.

Scientific developments

10. Since our predecessor Committee's Reports in 1995 and 1996, there have been significant developments in the science of genetics. Most notable was the completion of the first draft of the sequence of the human genome in June 2000, and the very recent publication of the sequences and map (February 2001). A number of specific genes associated with, or even directly involved in, the causation of a range of human diseases have also been identified by scientists, including some genes which have been isolated, their structure and, in some cases, their function determined. Studies are being carried out to find out whether such genetic defects can be corrected by insertion of the 'normal' gene - so called 'gene therapy'. In addition, the development of proteomics (the study of the protein products of the genome) is opening up the possibility of understanding the molecular and cellular basis of diseases.

11. The most significant development, for this inquiry, has been in laboratory techniques for the detection of specific genes or DNA sequences. For example, the gene for the dominant and fatal condition known as Huntington's Chorea has been cloned and a diagnostic test developed.[21] The increasing use of 'gene-chip' (also known as 'micro-arrays') technology, which allows the examination of many gene products simultaneously, will have a significant impact on the diagnosis of diseases, especially in relation to multi-genic conditions. It is therefore becoming increasingly feasible for the identification of disease-associated and other genes to be available at the level of the hospital pathology laboratory, and, within the foreseeable future, also in the primary healthcare surgery. The identification of over 1.4 million Single Nucleotide Polymorphisms (SNPs) within the human genome - points in the DNA sequence which differ between individuals at the level of single nucleotides - now provide markers to identify disease-associated genes in normal and patient populations.

5   Human Genetics: the Science and its Consequences, Third Report of the Science and Technology Committee, Session 1994-95, HC41-I. Back

6 Back

7   The working party launched its consultation document on 19th March 2001, with the closing date for submissions on 31st July. Back

8   The House of Lords Committee has already published its first volume of its evidence as: Human Genetic Databases: Written evidence received up to 31 October 2000, House of Lords Select Committee on Science and Technology, Session 1999-2000, HL Paper 115. It has now published its 4th Report: Human Genetic Databases: challenges and opportunities , House of Commons Select Committee on Science and Technology, Session 2000-01, HL Paper 57. Back

9  Notes to accompany applications to GAIC for approval to use genetic test results for insurance risk assessment, GAIC, June 2000, annex B. Back

10   Evidence, p 51, paragraph 1. Back

11   Evidence, p 43, paragraph (i). Back

12   Evidence, p 46, paragraph 1. Back

13   HC41-I. Back

14  Ibid. paragraph 246. Back

15   Ibid. paragraph 247. Back

16   Ibid. paragraph 248. Back

17   Government's Response to the Third Report of the House of Commons Select Committee on Science and Technology, 1994-95 Session, DTI, Cm 3061, January 1996, paragraphs 100-104. Back

18   Ibid. paragraph 100. Back

19   Human Genetics: The Government's Response, Third Report Session 1995-96, HC231-I, paragraphs 17-19. Back

20   Ibid. paragraph 19. Back

21   Huntington's Chorea is a rare hereditary disease characterised by involuntary movements and dementia. Each child of a parent with the disease has a 50-50 chance of developing it. The usual time of onset is between 35 and 45, but 10 per cent of cases occur under the age of 20. Black's Medical Dictionary, ed. Gordon MacPherson, 1999, page 258. Back

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