Memorandum submitted by the Human Genetics
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
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
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).
The full report is available on the HGC website (www.hgc.gov.uk).
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
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
(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
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
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
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
22 January 2001
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