GENETIC TESTS USED BY INSURANCE
COMPANIES
22. In November 1998, separately from the Code of
Practice, the ABI issued a list of ten tests for seven conditions,
which they recommended as sufficiently reliable to be used by
the insurance industry. It acted under the advice of its Genetics
Adviser, Professor J.A. Raeburn, Professor of Clinical Genetics
at the University of Nottingham.[48]
The list of ten tests for seven conditions are shown in the table
below.
23. While there has been much discussion about these
'ten tests for seven conditions' we were extremely surprised that
the list of the tests and conditions was apparently never published
in any widely available form, for example as an appendix to the
ABI Genetic Testing Code of Practice. The only place the ABI appears
to have put them into the public domain was on a very poorly advertised
and difficult to access website.[49]
Figure 1: List of conditions and genetic
tests recommended by the ABI as relevant for insurance purposes
Condition
|
Genes tested for(s)
|
Huntington's chorea
|
HD
|
Early onset familial Alzheimer's Disease
|
APP, PS1 and PS2
|
Hereditary breast and ovarian cancer
|
BRCA1 and BRCA2
|
Myotonic dystrophy
|
MDPK
|
Familial adenomatous polyposis
|
APC
|
Multiple endocrine neoplasia
|
RET
|
Hereditary motor and sensory neuropathy
|
PMP22
|
24. The Code of Practice requires all ABI members
to agree that if the GAIC decides a test is not relevant the customers
affected should be re-assessed back to 1st November,
1998 (the date the ABI first recommended using the tests). This
will apparently apply to both positive and negative results for
the gene.[50]
25. All ABI member companies abide by the Code, but
some regard it as a "minimum standard" and have chosen
to take different positions.[51]
The policies of the eleven insurance companies who contributed
evidence to the inquiry are laid out below, based on their submissions:
Figure 2: Insurance companies' policies
on the use of genetic test results in assessing insurance premiums
Insurance company
|
Do they comply with the ABI Code of Practice?
|
Which tests do they consider in insurance applications?
|
Aegon UK
(Scottish Equitable plc and Guardian)
|
Yes
|
All seven conditions.[52]
|
AXA Sun Life plc
|
Yes
|
All seven conditions.[53]
|
Barclays Life Assurance Company Limited
|
Yes
|
All seven conditions.[54]
|
Co-operative Insurance Society
|
Yes
|
Only considers negative results for life assurance and, since 13th February 2001, for all other types of insurance.[55]
|
Legal & General Assurance Company
|
Yes
|
All seven conditions.[56]
|
Norwich Union Life
|
Yes
|
All seven conditions.[57]
|
Prudential
|
Yes
|
Considers negative test results and, since 5th February 2001, positive results only for tests explicitly approved by the GAIC.[58]
|
Scottish Widows plc
|
Yes
|
All seven conditions.[59]
|
Standard Life Assurance Company
|
Yes
|
Only considers negative test results.[60]
|
Virgin Direct
Personal Financial Services
|
Not a member of the ABI
|
Only considers negative test results.[61]
|
Zurich Financial Services Ltd
(Allied Dunbar, Eagle Star and Zurich Life)
|
Yes
|
All seven conditions.[62]
|
26. One of the most difficult aspects of the inquiry
has been to discern, with any degree of certainty, exactly what
each company's attitude was to the use of tests. Norwich Union,
for example, told us in their initial memorandum that they would
use tests for "rare monogenetic disorders...only when approval
has been given by GAIC.".[63]
Yet at the oral evidence session, Mr Urmston, the company's Chief
Actuary, admitted that the Norwich Union is using tests prior
to approval by GAIC.[64]
In a similar manner, after submitting their original memorandum,
the Prudential discovered an "inconsistency" in their
policy and submitted a further memorandum to clarify their position.[65]
We could speculate that had more insurers been summoned to give
oral evidence, various other inconsistencies might have
emerged, especially as we had received several memoranda that
did very little to clarify their company's position.
27. During the inquiry it also became increasingly
clear that there was confusion among insurers about exactly what
the ABI's Code of Practice said, or did not say, about which tests
should be used. For example, in their written memoranda both AXA
Sun Life and Scottish Widows state that they follow the ABI Genetic
Testing Code of Practice.[66]
Yet Scottish Widows stated that "We intend using tests as
and when they are submitted to and approved for the purpose by
GAIC." (which would currently mean only considering the test
for Huntington's Chorea), while AXA Sun Life told us that they
would consider results from all ten tests for seven conditions,
based on the ABI's advice.[67]
Similarly, at the oral evidence session Mr Beddell-Pearce of the
Prudential told us that "The only tests that the industry
is using are in relation to Huntington's, early onset familial
Alzheimer's and breast and ovarian cancer".[68]
We know this was not the policy of several insurers at that time,
and Mr Beddell-Pearce himself later stated that insurers could
use "certain tests which were already in use prior to the
GAIC being set up".[69]
28. The ABI did not initially help to clarify this
confusion. The ABI's first memorandum stated that they recommended
the use of the ten tests for seven conditions detailed above.[70]
During the inquiry, however, we were informed by the Government
that the Association had agreed, after the publication of the
HGAC's first Report in 1997, that if any tests were not submitted
to the GAIC by December 2000 it would advise its members to withdraw
from using them.[71]
The GAIC informed us that apart from the test for Huntington's
Chorea, the ABI had only submitted applications for a further
four tests, namely those for early onset familial Alzheimer's
disease and hereditary breast/ovarian cancer.[72]
During the oral evidence session, the Prudential told us that
the ABI would be advising its members to cease using the remaining
five tests forthwith.[73]
This has subsequently been confirmed by the ABI in its supplementary
memorandum.[74]
29. Such a confusing situation can only further cloud
an already difficult, and emotive subject. If a Select Committee
of the House of Commons with all the resources at its disposal
finds it difficult to establish the facts in this case, we can
only speculate how difficult it must be for a member of the public.
It also creates the distinct impression that the insurance industry
either does not know what it is doing, as regards these tests,
or is being deliberately unhelpful, neither of which reflects
very well on insurers. The insurance industry has failed to
give clear and straightforward information about its policy on
the use of genetic test results to the public, and appears to
be uncertain itself about what exactly its policy is. We call
on all insurance companies to publish a clear statement detailing
exactly which genetic tests results they will consider (both positive
and negative), for which conditions and under which circumstances,
as soon as possible.
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