LIST OF RECOMMENDATIONS AND CONCLUSIONS
1. 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. (Paragraph 29)
2. We acknowledge insurers' concerns about
the risk of adverse selection and accept, as a principle, that
commercial insurance companies should have access to the same
information as applicants, where it is relevant and reliable -
but only if there are no adverse consequences for society as a
whole (for example, by discouraging people from taking tests).
(Paragraph 31)
3. It does not appear to be certain, at present,
that the information obtained from positive genetic tests is relevant
to the insurance industry. (Paragraph 32)
4. The ABI's decision that four of the tests
it recommended insurers use three years ago are now no longer
relevant or reliable casts the gravest possible doubts on the
validity of all the tests not explicitly approved by the GAIC,
being currently used by insurers. Insurers have given the test
results a predictive significance that cannot, at present, be
justified. (Paragraph 33)
5. Insurers appear to have been far more interested
in establishing their future right to use genetic test results
in assessing premiums, than in whether or not they are reliable
or relevant. (Paragraph 34)
6. If the insurance industry wishes to reassure
the public that they are acting in a reasonable manner, they must
publish more data which unequivocally supports the changes made
to insurance premiums based on positive genetic test results.
(Paragraph 36)
7. We recommend that insurers should publish
clear explanations as to exactly how such factors as early diagnosis
and treatment are factored into their actuarial calculations.
(Paragraph 37)
8. We suggest that at present the very small
number of cases involving genetic test results could allow insurers
to ignore all genetic test results with relative impunity, allowing
time to establish firmly their scientific and actuarial relevance.
(Paragraph 38)
9. The view of the ABI and some insurers,
that ignoring genetic test results would be too costly, is contradicted
by the actions of at least three insurance companies who have
decided to ignore tests for the short-term and do not seem to
regard it as an act of commercial suicide. (Paragraph 39)
10. We welcome the policy of companies who
take account only of negative test results in the calculation
of premiums. The scientific and actuarial evidence currently available
seems to indicate that this is the only justifiable use that can
currently be made of genetic test results. We strongly recommend
that the ABI and other insurers consider this when reviewing their
policies. (Paragraph 40)
11. We recommend that insurers explain publicly
how they use family history information in the assessment of insurance
premiums, and publish the supporting data. (Paragraph 41)
12. If the use of tests by insurers is to
be allowed, adequate research must be carried out to discern the
impact of the use of genetic test results by insurance companies
on the likelihood of patients seeking clinical advice. This research
must be independent and have the confidence of all those involved
but, as it is the insurers who wish to use the tests to protect
their own interests, they should provide the funding. (Paragraph
45)
13. The distinction between genetic tests
carried out for purely research purposes and for diagnostic purposes
must be clearly understood by all those who seek to use the results.
(Paragraph 47)
14. The statement by insurers and the ABI
that they will never use results from genetic tests carried out
for research purposes is extremely welcome. We recommend that
this principle be incorporated into the ABI Code of Practice without
delay. (Paragraph 48)
15. The Government and the insurance industry
must collaborate to provide an alternative form of insurance for
those who would be denied it because of their genetic make-up.
Alternative insurance arrangements may help to calm public fears
about the risk of a genetic underclass. (Paragraph 52)
16. We believe that it is an unacceptable
conflict of interests for a geneticist nominated by the ABI to
judge his own test application, as a member of the GAIC. (Paragraph
56)
17. We recommend that the membership of the
GAIC should be throughly reconsidered if it is to inspire public
confidence in its decisions. (Paragraph 57)
18. We recommend that the reformed GAIC re-examine
the decision to approve the use of the Huntington's Chorea genetic
test for use by insurers, with extensive peer review both for
the data supplied by insurers and its own decisions, prior to
publication. (Paragraph 58)
19. The GAIC should be given the ability to
approve the use of negative test results alone for use by insurers,
without allowing the use of positive results. (Paragraph 59)
20. We recommend that some mechanism be established
to facilitate applications for the approval of tests by the GAIC,
from bodies other than insurers. (Paragraph 59)
21. It is imperative that the GAIC be properly
resourced for the work it is doing. (Paragraph 60)
22. The previous unwillingness of Government
to become involved in this area has contributed to the atmosphere
of confusion and ignorance that pervades the use of genetic test
results. (Paragraph 62)
23. There must be doubts whether the ABI,
a trade organisation funded by insurers to represent their own
interests, is the right body to regulate the use of genetic test
results. (Paragraph 64)
24. The ABI must act as a matter of urgency
to convince the Government and the public that the Code of Practice
is being complied with. (Paragraph 65)
25. Insurers must prove that they are capable
of regulating themselves effectively and thoroughly, with sanctions
in place to ensure compliance. The ABI's Code of Practice is a
welcome step in the right direction by insurers but it is inadequate
in its present form. The reformed GAIC should make recommendations
to the ABI for its Code of Practice. The GAIC should also closely
monitor insurers' compliance with the Code. (Paragraph 66)
26. Insurance companies were wrong to use
the results of genetic tests in assessing risk before they had
been approved by the GAIC. We recommend that all insurance companies
should immediately cease to use the positive results from any
genetic test that has not been explicitly approved by the GAIC.
(Paragraph 67)
27. The insurance industry would certainly
benefit from concentrating efforts on building public confidence
in its actions and motives, rather than giving itself the right
to extend its ability to load premiums. (Paragraph 68)
28. We do not believe that legislation denying
insurers access to all genetic test results would be appropriate.
(Paragraph 70)
29. The best way forward for the Government
and industry would be a voluntary moratorium on the use of all
positive genetic test results by insurers for at least the next
two years. During this time more research should be done to establish
the actuarial and scientific relevance of genetic test results
to the assessment of premiums, and the possible consequences for
research and healthcare. If the insurers are unable, or unwilling,
to regulate themselves and enforce this moratorium, we recommend
that Government enforce its will by legislation. We further recommend
that insurers should still consider negative test results in assessing
insurance applications throughout any moratorium. (Paragraph 71)
30. It would be better for the insurance industry
to act responsibly now, rather then be forced into a commercially
compromised position in the future. (Paragraph 72)
31. We strongly recommend that the HGC should
continue to monitor the use of genetic test results by insurers
and the consequences of their actions, in their widest possible
context, and advise Government on further developments as they
arise and in a timely manner. (Paragraph 73)
32. The HGC's programme and, in particular
its efforts to involve as many of the public as possible in its
consultations, should not be undermined by a lack of resources.
The Government should, as a matter of urgency, review the funding
and resources the HGC is allocated. If the HGC is to receive extra
work as a result of our recommendations, this should also be reflected
in its budget. (Paragraph 74)
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