APPENDIX 27
Supplementary memorandum from the Association
of British Insurers
Further to the Science and Technology Committee's
oral evidence session on 7 February in connection with the above
inquiry. I thought it might be helpful to provide further information
on some of the issues that arose.
ABI CODE OF
PRACTICE ON
GENETIC TESTING
It seems that there may have been some misunderstanding
about the scope of the ABI's Code of Practice on Genetic Testing.
The code does make provision for insurers to use the results of
a limited number of genetic tests that were identified in November
1998 by the ABI's genetics insurance adviser as having potential
relevance for insurance purposes (see paragraph 33 of the Code).
We have already sent you a list of these tests. Life companies
have been free to use these tests, and in practice most have done
so, but there have been very few applications on this basis.
This provision is a transitional one. The code
also commits insurers to abiding by the decisions of the Genetics
and Insurance Committee (GAIC) on whether the test results are
valid for insurance purposes. If GAIC concludes that a test result
is not valid for insurers, under the Code insurers will have to
stop using the test result and re-underwrite back to November
1998 any cases where people have been treated less favourably
as a result of disclosing the results in question. The Code therefore
allows insurers to continue to use the results of the tests identified
by ABI's genetics adviser in 1998, where applications have been
submitted to GAIC by the end of 2000, until GAIC's views are known.
As we mentioned in our earlier memorandum to
the Committee (paragraphs 8-9),[9]
the ABI had not submitted applications to GAIC in respect of four
tests out of the original list. These related to familial adenomatous
polypois, multiple endocrine neoplasia, hereditary motor and sensory
neuropathy and myotonic dystrophy.
Although the tests for these conditions remained
useful general indicators of increased morbidity or mortality,
we were concerned that the results should only continue to be
used where their relevance for insurers was clear. In the light
of factors such as the average age of onset for each condition,
its relationship with typical insurance buying age and insurers'
experience of buying patterns, we were not sure that these tests
really had enough practical value. At the time we submitted our
memorandum, we were still waiting for GAIC's views on this approach.
Having now received a response from GAIC, ABI
has confirmed that it will not be submitting applications at this
stage. Applications could be brought forward at a later date if
changes in insurers' experience, customer behaviour or other developments
(for example in science or technology) suggested that the practical
value of these test results for insurance had changed.
Further to its decision not to submit applications
for these genetic tests, ABI has instructed its members to stop
using the test results and to re-underwrite back to November 1998
any cases where people have been treated less favourably. We have
already sent you a copy of our circular to members of 15 February
2001.[10]
GENETIC TESTS
UNDERTAKEN IN
THE CONTEXT
OF RESEARCH
It has been suggested that people may be put
off taking part in genetic research projects because they fear
that insurers will use the results of any tests they undergo in
that context in the underwriting process. This is not in fact
the case. Insurers regard genetic research as crucial for developing
new approaches to the prevention and treatment of serious conditions,
and do not wish to discourage people from participating in such
research. This statement is intended to clarify the position of
ABI members.
Insurers are only interested in the results
of genetic tests where the results have been communicated to the
individual as part of a clinical diagnostic process and then only
if the test has been approved by GAIC (or is one of the tests
submitted to GAIC by December 2000). Research projects rarely,
if ever, produce test results that meet these criteria, and in
these circumstances insurers would not be interested in any test
results that the projects did produce.
In addition, whatever the circumstances, insurers
do not take account of genetic test results that are made available
to policyholders after their policy has been taken out. If someone
already has an insurance policy, it will not be affected by the
policyholder participating in a research project concerned with
genetic testing.
ABI hopes that this statement of its members'
position will reassure people who are asked to take part in genetic
research, and encourage them to participate in taking forward
this vital area of work.
AVAILABILITY OF
APPLICATIONS TO
THE PUBLIC
The ABI's applications to GAIC are listed on
GAIC's website, at http://www/doh.gov.uk/genetics/gaicapplications.htm.
Copies of applications can be obtained on request from the GAIC
Secretariat.
I hope this is helpful to the Committee. Please
do get in touch if any further information would be of use.
5 March 2001
9 See p 52. Back
10
Not printed. Back
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