APPENDIX 6
Memorandum submitted by The Wellcome Trust
INTRODUCTION
1. The Wellcome Trust (the "Trust")
is an independent, medical research-funding charity, established
under the will of Sir Henry Wellcome and funded from a private
endowment, which is managed with long-term stability and growth
in mind. Its mission is to foster and promote research with the
aim of improving human and animal health. The Wellcome Trust supports
more than 4,000 researchers at 300 locations in 42 different countries.
In addition, as well as funding major initiatives in the public
understanding of science, the Wellcome Trust is the country's
leading supporter of research into the history of medicine.
(i) What do you feel to be the main
benefits and disadvantages of insurance companies using genetic
test results in assessing policies?
2. The relevance of genetic test results
to insurance is complex. It depends on the insurance product being
offered, on the underwriting practices of the individual insurance
company, and on national policies for organising social benefits
such as housing, healthcare and long-term care in old age.
3. Essentially genetic tests can be used
as one of the predictors of future ill health. Therefore there
are a number of reasons why insurers might believe it is in their
interests to seek disclosure of genetic test results:
— That the results of genetic tests
would provide them with an empirical evidence base by which to
set insurance premiums related to health by identifying a "pool"
of higher risk individuals and excluding them from coverage. Alternatively,
high risk individuals could have their premiums adjusted to take
account of the increased risk.
— The second motivation is a fear of
adverse selection—essentially that people with private knowledge
of an adverse genetic test result might insure themselves disproportionately
as a reaction to that result and without telling the insurer of
their status. This is, in essence, an attempt to defraud the insurer.
4. Knowledge of these test results would
be seen as an advantage to the insurers by reducing their risk
and improving their financial results.
5. However, the disadvantage of this approach
is that the scientific evidence and the predictive quality of
genetic research used in medical research cannot be immediately
translated into actuarial calculations of when a person will develop
a certain disease and if they will die within the term of the
insurance policy.
6. This is because genetic tests are very
good at identifying those individuals who have a genetic abnormality,
a mutation in, or absence of, a particular gene. However, even
for the highly heritable single gene disorders, there is less
certainty in identifying who will go on to develop the disease
and at what stage they will develop the disease. There are examples
where a minority carry the genotype which should lead to disease
expression but they do not. Therefore genetic tests are not (yet)
good at predicting when disease will start, how rapidly it will
progress, and thus when death will occur.
7. This was one of the conclusions in the
report produced by the Human Genetics Advisory Commission (HGAC),
established by this same Select Committee, "The implications
of genetic testing for insurance", published in December
1997. In its report, the Commission concluded that there was insufficient
evidence to support the use of genetic test results in life insurance
and recommended a moratorium for at least two years.
8. The HGAC laid out the methodology it
expected to see followed in the evaluation of the scientific and
actuarial evidence presented in support of a specific genetic
test or insurance products. It expected that:
"the connections between specific test results
and discrete actuarially relevant events would be established
by way of research published in peer-reviewed journals. Such research
will require increased collaboration between geneticists, clinicians,
actuaries and others".
9. In the subsequent three years the Trust
is not aware of a significant body of such work which has been
conducted and published in line with the conditions outlined above.
10. Therefore specific research correlating
gene changes with mortality experience is still necessary before
insurance implications can be safely assessed. The medical genetic
literature remains poor in this area, and insurers appear to have
conducted little research of their own or made attempts to fund
this work by others.
11. It is worth noting that this opinion
appears to be held within the insurance industry itself as the
request for disclosure of genetic tests is not a universal requirement
by all companies. The committee may wish to seek the views of
those companies who in the past have not decided to request disclosure
of genetic test results[1].
The current situation is not known.
12. The Wellcome Trust has taken several
initiatives to try and promote research and analysis that would
be relevant to public policy in this area.
13. During 1996, staff in the Trust's Policy
Unit undertook research into perceptions of genetic discrimination
in life insurance. The results were published in the BMJ in 1998[2].
As far as the Trust is aware, no other empirical study of genetic
discrimination in insurance within the UK has been conducted.
14. In 1997, the Governors of the Trust
established a programme to support research into the social, ethical
and public policy implications of advances in biomedicine, focusing
particularly upon neuroscience and upon genetics. The Trust has
received one preliminary approach from an academic group, but
has yet to receive a full grant application even though research
projects in the area of genetics and insurance would be eligible
for funding under this programme.
15. The Trust made a significant financial
contribution as a founder member of the UK Forum for Genetics
and Insurance, set up following an initiative by the Institute
and Faculty of Actuaries in 1998. (Membership does not however
mean that the Trust necessarily subscribes to all statements put
out by the UK Forum).
(ii) How effective do you feel the
current regulatory system is?
16. There does not appear to be an effective
form of regulation. The recommendation of the HGAC for a moratorium
on the use of genetic tests by insurers for two years was not
endorsed by Government but they did opt instead to establish a
new body: the Genetics and Insurance Committee (GAIC). The Association
of British Insurers have only an agreement to abide by the GAIC
findings, it is not a statutory requirement. This body has only
produced one judgement, on Huntingdon's, published on their website.
Whilst the background information which informed their opinion
was open to review by a small number of relevant individuals,
the justification for their decision was not subject to the rigours
of peer review required for publishing in a respected journal
as recommended by HGAC.
17. Therefore a concern remains that decisions
made by GAIC are open to question as their methodology is not
available for scrutiny. In addition the ABI are not legally bound
by any such decisions.
(iii) Do you feel the use of genetic
test results could have an effect on medical research and progress
in your area?
18. There was considerable media interest
in the decision by the GAIC to allow the results of genetic tests
for Huntingdon's to be used by the insurance industry and therefore
a link has been established in the public arena between genetic
tests and financial implications.
19. If this results in an increase in discrimination
by insurers for people undergoing genetic tests then there is
the potential that people will become more wary of consenting
to participate in medical research studies and trials. The Trust
has noted comments made by many clinical geneticists at conferences
that patients from families affected by a genetic disorder do
take insurance considerations into account before deciding whether
or not have genetic tests.
20. In addition, neither Government nor
the insurance industry have made any provision for those individuals
who might "fail" an approved genetic test and be excluded
from insurance as a result. The Committee may wish to examine
what provisions would be appropriate for individuals whose insurance
applications are rejected on genetic grounds, in particular whether
provisions should be made from public funds or from pooled resources
within the insurance industry.
21. The Trust would not argue that this
will have a major effect on medical research in isolation but
it could begin to tarnish the reputation of genetic research with
a resultant loss of public confidence. Genetic testing could become
associated with sharp commercial practice with little independent
regulation.
22. Our own research into public attitudes
has revealed that access by third parties to the results of genetics
tests is a major concern when members of the public consider human
genetics research. It is raised repeatedly and unprompted in public
discussions and notably through the recent public consultation
research into the proposed human biomedical samples collection[3].
There is minimal awareness of those regulations and guidelines
intended to protect individuals' privacy in such cases and it
appears that the insurance industry is trusted even less than
genetic researchers.
23. Research on public attitudes sponsored
by the insurance industry has also highlighted [the]:
"significant mistrust among customers of
insurance companies—not just life offices—which have
built up over a long period of time".
This study commissioned by Swiss Re Life and
Health in 1998 suggested that only 8 per cent of the public believed
they should be obliged to share the results of genetic tests with
their insurance company[4].
24. Last year's House of Lords' report discussed
the relationship between science and society in terms of a "crisis
of confidence". The regulation of genetics and insurance
must be judged against the criterion of whether it will help diminish
that crisis or whether it risks exacerbating the situation. On
the present evidence, the judgement must be that it risks contributing
still further to that crisis.
22 January 2001
1 Examples of insurance companies who did not use
genetic test results to determine life insurance premiums in 1999-Britannic
Assurance (asks for information but doesn't use it for life insurance),
Equitable Life, Hiscox, Ideal Benefit, London Life Ltd., National
Mutual Life, Pinnacle, Standard Life, Virgin. Genetic Ransom:
Policy challenges in genetic testing. Joanna Harkness MSc thesis,
Science Policy Research Unit (SPRU), University of Sussex. Back
2
Low L, King S & Wilkie T (1998), "Genetic discrimination
in life insurance: empirical evidence from a cross sectional survey
of genetic support groups in the United Kingdom", BMJ, 317,
pp 1,632-1,635. Back
3
Public Perceptions of the Collection of Human Biological Samples,
The Wellcome Trust, 2000. Back
4
The Insurance Report 1998-Life Results, Swiss Re Life and Health
Limited, 1998. Back
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