Memorandum submitted by Professor J A
Raeburn, Professor of Clinical Genetics, University of Nottingham
1. I am Professor of Clinical Genetics at
Nottingham University and Honorary Consultant Clinical Geneticist
in the Centre for Medical Genetics, City Hospital, Hucknall Road,
Nottingham, NG5 1PB. My special interest is in Genetics in the
Community, specifically how people in the community come to terms
with genetic disadvantages and how our services can help them.
2. The National Health Service funds my
post at Nottingham University, and a multidisciplinary team of
clinicians and laboratory scientists. Our major aim is to provide
and build up Genetic Services, so that people with genetic disadvantages
can live and reproduce as normally as possible.
3. My clinical genetic and ABI work both
involve the assessment of genetic risk, plus the task of summarising
this in a clear manner.
4. If a genetic test result is available
from someone at genetic risk, it makes it possible to be more
precise about the risk. However, the age of onset of symptoms,
or of the ages of significant disability, the onset of cancer,
or of death will be variable.
5. With an individual who is test positive,
the uncertainty (in 4 above) makes interpretation difficult.
6. For insurers, the uncertainty about a
particular event (as in 4 above) is less of a problem. This is
because underwriting is based on group data, not the exact timings
for each individual.
7. The data about the prognosis of genetic
conditions that are collected separately by clinicians and insurers
are complementary. I have access to both sources and this gives
8. The UK has had more detailed debate on
genetics and insurance than any other country. This has added
to knowledge; the UK now leads the world as a source of relevant
evidence-based insurance practice where genetic disorders are
9. Examples of UK initiatives are:
(i) The first Genetics Code of Practice (1977).
This included detailed considerations of ethical and confidentiality
issues. It also included an appeals procedure, which was without
cost to individual applicants who considered that in their situations
the Code had not been observed.
(ii) The first Genetics and Insurance Committee
(GAIC) to advise government and inform the public. See for example,
the GAIC website with details of its considerations of applications
from insurers. The GAIC decision on Huntington's Disease (HD)
genetic tests and life insurance (October 2000) did provoke criticism,
being the first collection of data about the additional information
that HD genetic tests provide, of insurance relevance. Whilst
there were also criticisms of the actuarial model, all the alternative
models suggested also demonstrated the actuarial relevance of
knowing an HD genetic test result. Discussion of other applications
to GAIC will also provoke differing views and will thereby add
to our understanding.
(iii) The UK Forum on Genetics and Insurance
is also unique. it is independent and it publishes (on its website)
details of how insurers might use and interpret genetic results.
(iv) The UK has the first Genetics and Insurance
Research Centre in the world (Professor Angus Macdonald, Heriot
Watt University, Edinburgh). This Centre disseminates its work
rapidly via the website.
(v) In addition, the UK has consistently
had timely conferences and reports on wider issues such as genetics
and bioethics or confidentiality (eg from the Wellcome Trust,
the Genetic Interest Group or the Nuffield Foundation).
10. These UK strengths make it possible
to collect data on which decisions on individual insurance issues
can be based. Thus unfair discrimination is unlikely but if it
does occur, or is suspected, it can be resolved at no cost to
11. Of other single gene disorders, for
which tests are currently available at NHS genetic centres, the
condition known as hereditary non-polyposis colorectal cancer
(HNPCC) is the one that might be considered for a future GAIC
application. For this condition, a positive or negative test in
an "at risk" person gives highly predictive information.
During the past two years there has been an increase in both clinical
genetic and insurance enquiries about this condition. Since there
are well-developed regimes to reduce cancer risk in test positive
people who have HNPCC, underwriters can take these beneficial
factors into account in assessing the insurance risk.
12. There are many diseases in which genetic
factors play a part but in which the knowledge of a genetic test
result does not provide sufficient predictive value. An example
would be late onset Alzheimer's disease, which is associated with
particular genetic patterns of the APOE gene. Applications to
GAIC for access to such APOE results would only be made if there
were a sufficiently high predictive value.
13. The insurance industry has been using
family history data for over 100 years, much longer than have
geneticists! When enquiries to me as Genetic Adviser include family
history information (often with positive genetic test results
as well), the accuracy of the family history is always considered.
Ideally asking the relevant geneticist for an assessment of the
individual's risk would check this, because this would obviate
disclosure of confidential information about members of the family.
14. Currently, I am analysing the Genetic
Adviser queries received from insurers via the ABI since 1997.
The early evidence from these is that underwriting decisions after
genetic consultation are reasonable and often lead to premiums
at standard rates or at rates only a little above standard.
15. It would be worth looking outside the
UK to see if moratoria have been successful in terms of helping
the genetically disadvantaged. I have not yet seen any evidence
of such an advantage, especially as regards insurance premiums.
16. Most people would be happy to help the
disadvantaged, in particular, those with genetic disadvantages.
If we do that, we should use methods that work and which are cost-effective.
Non-disclosure of known genetic test results as in the moratoria
of some countries (see l5) may not work. In any case, a moratorium
is only one strategy to help people with positive genetic tests.
There are almost certainly other, better, strategies.
17. The increased use of genetic tests in
medicine has led to greater numbers attending genetic clinics.
Throughout the country more resources are needed to provide the
necessary services. If the principle were accepted, that insurers
only wished to know of genetic test results if they had predictive
value exceeding a particular level, then it would clarify the
situation and simplify the procedures of GAIC. Since the levels
of prediction would be similar to those in clinical genetic use,
simple summaries from an applicant's geneticist could ensure that
premiums were fair.
18. The media slant on genetics and insurance
might deter people from having tests. We should seek accurate
figures of how many people have chosen not to come forward for
genetic tests because of the adverse media coverage or for other
reasons. For some time, I have been seeking this information and
also the proportion of people who cannot afford the premium rates
offered, from organisations such as the Huntington's Disease Association
and brokers with relevant experience.
19. It is good that the approach of insurance
companies (partly because of their differing products) does vary
so much. This gives potential applicants (including those with
a family history of genetic disease) more choice. Some insurers
may use the privilege of having access to genetic test results,
whilst others will not. Both approaches could benefit those at
genetic risk, but in differing circumstances.
20. In the UK, based on legitimate actuarial
modelling and predictions which will steadily become more precise,
there is a system, which can enhance the gathering of more data.
This will be used to fine-tune the range of possible approaches
to underwriting when there is a genetic disorder.
21. It is important to consider all possible
options to help those most disadvantaged by genetic disorders.
The best option might be a "mixed market" of insurers,
all using the ABI Code of Practice as a core standard. Some companies
might then develop special options, but these could vary to enhance
choice. The insurance industry, the genetic community, patient
interests groups (such as the Genetic Interest Group) and the
Government need to examine all the options. Several different
approaches will be better than non-disclosure of known genetic
test results. A decision, either to request a voluntary moratorium
or to ban insurance access to test results, would preclude the
types of research, which might inform such options.
22. I am very sensitive about possible "conflicts
of interest" in my differing roles and take all steps to
declare my three related commitments, to patients, to the ABI
and to GAIC.
23. I would be prepared to help the Committee
in any way to progress this issue in ways that would be to the
benefit of patients and families with genetic diseases.
22 March 2001