Select Committee on Science and Technology Appendices to the Minutes of Evidence


Memorandum submitted by the Human Genetics Commission

  1.  The Human Genetics Commission (HGC) was formed in 1999 as the 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.

  2.  HGC is chaired by Baroness Helena Kennedy QC. The terms of reference and membership are at Annex A.

 (i)   How the HGC interprets its role in this area

  3.  The HGC's first priority outlined in their draft work plan was to look at the existing protections for the storage and use of personal genetic information, establish a set of general principles, and produce a report and recommendations for Ministers by late 2001. In response to requests both from Ministers and the Genetics and Insurance Committee (GAIC) the HGC will as part of this work, consider the social, ethical and legal implications of the use of genetic tests in insurance.

  4.  An HGC working group has prepared a discussion document entitled "Whose hands on your genes?", which summarises the ethical and legal issues (enclosed). It poses a series of questions about the various ways in which genetic information is gathered, stored and used in both medical and non-medical (eg forensic) contexts.

  5.  The discussion document was launched at HGC's public meeting at the Centre for Life in Newcastle on 27th November 2000. The meeting involved round table discussions with over 200 15-18 year old students in the afternoon and with over 200 members of the local public in the evening. The consultation exercise ends on 28 February.

 (ii)   The HGC's view of the way matters are regulated in this area

  6.  The HGC has not yet had an opportunity to discuss the regulation of genetic tests by insurers in detail, but will be doing so at an information-gathering meeting on 9 February 2001 (see below).

  7.  Section 9 of "Whose hands on your genes?" summarises the UK and international position on genetic testing and insurance. In particular it reflects the developments since our predecessor committee, the Human Genetics Advisory Commission (HGAC), published its report "The Implications of Genetic Testing for Insurance" in December 1997. The HGC also commissioned a more in-depth review of international legislation on the use of genetic information. An extract of the report summarising the international controls on insurance is enclosed (Annex B)[6]. The full report is available on the HGC website (

  8.  At our meeting on 28 November, HGC briefly discussed the public concern following the announcement by the GAIC on the use of the genetic test result for Huntingdon's Disease. Such concern was apparent from the survey of the People's Panel that HGC commissioned (see Annex C)* and the discussion at our public meeting in Newcastle.

  9.  The Commission also discussed the confusion amongst the public and media over the exact relationship between HGC and GAIC. GAIC was established as part of the Government response to the HGAC's report (November 1998). It has a narrower remit to consider the clinical and actuarial relevance of genetic tests for particular genetic conditions and insurance products. GAIC acknowledges that it cannot address the wider issues raised during its consultation on its criteria for review or in response to the recent decision on the use of tests for Huntingdon's Disease in life insurance.

  10.  In December last year the Chair wrote to Health and Science Ministers relaying the strongly negative public reaction and raising the apparent confusion over roles of the two committees. The letter also formally asked Ministers for GAIC's assistance in conducting the wider review of genetic testing and insurance, whilst recognising that this may have implications for their own work programme.

 (iii)   The work the HGC is currently undertaking, especially in relation to this issue

  11.  The consultation document "Whose hands on your genes?" poses the following questions about the use of personal genetic information by insurers:

Questions: Personal genetic information and insurance

  9.1  Is this [Section 9] a fair representation of the insurance issues? Is there anything else we should have added?

  9.2  Should insurance companies be required to consider personal genetic information differently from other medical information or family history. If so, why?

  9.3  In the light of the above questions, what principles should govern the way insurance companies may or may not use pre-existing personal genetic information?

  9.4  Should any such principles draw distinctions between:

    (1)  different types of insurance (eg life/health)?

    (2)  different types of condition (treatable/untreatable)?

    (3)  the value of the policy to be insured?

  9.5  The HGC will be separately considering other aspects of the use of genetic test results in insurance. Are there any particular issues you would like to draw to the Commission's attention?

  12.  Recognising that these do not address all of the concerns around genetic testing and insurance, the HGC has agreed to take more detailed evidence from a range of interests. In particular, HGC wishes to review developments since the HGAC's report was published in 1997.

  13.  The HGC will therefore hold an information-gathering day on genetics and insurance on 9 February 2001 at the Royal Commonwealth Club, London. The Commission will hear presentations from all sides of the debate, particularly academic insurance experts, the insurance industry, patient support groups and geneticists. The intention will be to allow an informal discussion session with these and wider interests, such as those responsible for data protection financial services and consumer protection. In common with all full HGC meetings, the meeting will be open to the public.

  14.  It is intended that a report from the information-gathering day, together with relevant responses to the consultation, will be discussed at the HGC's main meeting on 2 March. The Commission will then discuss what additional work will be necessary on insurance and what form their report and recommendation on this may take. The final report and recommendations on the storage, protection and use of genetic information is due in the autumn, but it is possible that some elements of the work, for example on insurance, may be completed earlier.

  15.  The Commission would also be interested in considering any report from the Science and Technology Committee following this inquiry. We are also aware of seminars and research work being conducted by the Association of British Insurers and the UK Forum for Genetics and Insurance.

 (iv)   Whether any consideration has been given, by you or other bodies, to the wider implications of decisions made on the use of genetic test results

  16.  HGC is still actively considering the wider social and ethical implications of the use of genetic test results in insurance. HGC wishes to consider all sides of the debate. There are many who argue that insurance companies may unfairly discriminate against people who, on the basis of the results of genetic tests, are perceived to be at greater risk of developing certain conditions. A group of people might therefore arise who would find it impossible to obtain certain forms of insurance cover. Others argue that personal genetic information is no different from other forms of medical information. To deny insurers access to genetic test results would undermine the current mutual models of insurance and may mean a major alteration to the way that insurance is bought and sold in the UK.

  17.  The Commission will also want to consider wider concerns, such as those raised by the National Screening Committee with respect to the potential implications on insurance for people who participate in health screening programmes (such as for cervical or breast cancer).

 (v)   What effect the use of test results by insurance companies could have on research in the UK

  18.  HGC are well aware that public concerns about the use of personal genetic information by insurers or employers could have a significant impact on people's willingness to seek genetic tests or participate in important research. This is central to many of the questions in HGC's discussion document and is being considered actively by others, including the House of Lords Select Committee on Science and Technology in their inquiry into genetic databases.

  19.  In particular, both committees are particularly interested in plans for large databases to link genetic information with 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.

  20.  HGC hopes that our discussion document and consultation, as well as the other initiatives such as the Science and Technology Committee's current inquiry, will stimulate a wide debate on what protections society should put in place to prevent unfair discrimination or exploitation whilst at the same time reaping the health rewards from developments in human genetics.

22 January 2001

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