APPENDIX 22
Memorandum submitted by Breakthrough Breast
Cancer
1. Breakthrough Breast Cancer's vision is
a future free from the fear of breast cancer. We aim to achieve
this by research, and raising awareness. In partnership with the
Institute of Cancer Research, Breakthrough established the first
dedicated breast cancer research centre, based at the Institute
of Cancer Research. We welcome the chance to submit a memorandum
to the Science and Technology Committee at this late date. However,
we are greatly concerned that we were not contacted by the Committee
at the beginning of this enquiry and were only made aware of it
inadvertently in discussions with staff of another charity. It
is essential to have a comprehensive debate about the important
issue of the use of a genetic testing in insurance. Since the
Association of British Insurers have classified results of genetic
tests for the breast cancer susceptibility genes, BRCA1 and BRCA2,
as being suitable for insurance purposes, Breakthrough Breast
Cancer has a special interest in deliberations on this topic.
Our memorandum has two main themes: firstly general concerns about
the use of genetic testing in insurance; secondly issues specific
to BRACA1 and BRCA2.
GENERAL ISSUES
2. Progress in the identification of human
disease genes and improvements in technologies to routinely test
for genetic alterations have accelerated at a remarkable rate
in the last few years. While scientific progress has been rapid,
clear analyses of the associated ethical and social questions
have been much slower. The use of genetic tests for insurance
purposes is one of the first major issues arising from scientific
advances in the understanding of the human genome and has broad
ethical and social implications. As such it is vitally important
that these topics are dealt with in a comprehensive and considered
manner.
3. The Science and Technology Committee
should consider the issue of whether the use of genetic testing
for insurance purposes is a form of unfair discrimination. This
would be undesirable in itself and would also seem to be contradictory
to the Government's desire to reduce social exclusion. Moreover,
the European Convention on Human Rights and Biomedicine states,
"any form of discrimination against a person on grounds of
his or her genetic inheritance is prohibited".
4. There are concerns that the perceived
threat of discrimination by insurance companies may hamper medical
research. Individuals may be deterred from taking part in medical
research in which a genetic test is performed, due to concerns
about confidentiality of these results.
5. The use of genetic testing for insurance
purposes is one of the first major ethical issues related to genetics
to be dealt with by the Government. As such, decisions about genetics
and insurance may impact on future decisions about the use of
such tests in other areas, eg employment. The implications of
potentially precedent-setting decisions need to be carefully debated.
6. The potential justification for such
discrimination by the insurance industry is that it is necessary
for financial stability, ie insurance would not be a viable without
it. There is a theoretical possibility of adverse selection, in
which people who knew (but did not disclose) that they were a
higher risk could be motivated to buy extra insurance. However,
the Human Genetics Advisory Commission concluded in its 1997 report
that such adverse selection would likely be limited in scope and
on balance could be withstood by the life insurance industry.
7. In principle, public opinion on these
issues should be taken into account. At present public opinion
is weighted against the use of genetic tests for insurance purposes.
For example:
— The survey undertaken by the Human
Genetics Commission at the end of 2000 found that the majority
of people (76 per cent) believe that genetic information should
not be used for setting insurance premiums.
— The British Social Attitudes survey
of 1999 indicated that the majority of the public (75 per cent)
believe that insurance companies should not be allowed to use
genetic tests when determining insurance premium rates.
— The ABI held a citizen's jury in
1997 which concluded that insurers should only have access to
genetic test results if they were negative, did not raise premiums
and were tests for monogenic diseases.
SPECIFIC ISSUES
8. Breakthrough Breast Cancer is specifically
concerned about the potential use of presymptomatic testing for
BRCA1 and BRCA2 mutations. At present only a small percentage
(5-10 per cent) of breast cancers can be attributed to inheritance
of mutant versions of these genes. There are specific technical
questions related to testing for mutations in BRCA1 and BRCA2
which need to be addressed: (i) reliable estimates of the penetrance
of these mutations in different sub-populations within the UK
are required; (ii) because of the size of these genes and large
number of different mutations/polymorphisms, it is often unclear
whether specific mutations/polymorphisms predispose to breast
cancer.
9. At present it is a very difficult decision
for a woman to undergo genetic testing for alterations in the
breast cancer susceptibility genes. Such women have to face a
number of emotional and social issues. However, in some cases,
genetic testing can have important medical consequences and may
influence decisions to undertake preventative measures (such as
prophylactic mastectomy or the use of drugs like tamoxifen for
chemoprevention) or increase the level of surveillance. We are
concerned that women who have had a positive genetic test, which
shows a predisposition to breast cancer may be unduly influenced
by economic incentives (such as being able to afford insurance)
to undertake radical measures, such as prophylactic mastectomy.
SUMMARY
10. Breakthrough Breast Cancer believes
that there are broad social and ethical issues relating to the
use of genetic testing and insurance, which need to be carefully
considered. We welcome the current debate and look forward to
being involved in any future deliberations.
5 February 2001
| 
