CMAJ • APR. 27, 2004; 170 (9) Online-1
© 2004 Canadian Medical Association or its licensors
The 2003 “Public Opinion Research into Genetic
Privacy Issues”1found that the wide majority of
Canadians reject the right of insurance companies
to ask for genetic information and this even if applicants
have knowledge of a genetic condition.
The position of the Canadian Life and Health Insurance
Association is that: “… insurers would not require an appli-
cant for insurance to undergo genetic testing. However, if
genetic testing has been done and the information is avail-
able to the applicant for insurance and/or the applicant’s
physician, the insurer would request access to that informa-
tion just as it would for other aspects of the applicant’s
Over the past year, insurers, patient advocates, re-
searchers and/or clinicians involved in the Genetics and
Society Project of the Université de Montréal, Genome
Canada projects (Quebec and Ontario) and in the
INHERIT BRCAs Project (Interdisciplinary Health Re-
search International Team on Breast Cancer Susceptibility,
Canadian Institutes of Health Research) met as the Can-
adian Genetics and Life Insurance Task Force to further
the debate on genetics and life insurance in Canada.
Prior to any discussion of possible approaches (IV) or
points to consider (V), it is important to note that the
whole area of genetics (I) and insurance (II), is a subject
that is ripe with misconceptions (III).
“Genetic testing can be narrowly or broadly defined.
Narrowly defined, genetic tests are those tests that are
based on the presence or absence of specific genetic abnor-
malities. If tests based on the end-products of most genes
are included, the definition is broadened enormously.”3In-
deed, in common diseases such as diabetes, asthma or can-
cer (as opposed to inherited, single-gene diseases) genetic
risk factors are probabilities. Expression of these risk fac-
tors is influenced by gene–gene interactions, medical inter-
ventions, socioeconomic and lifestyle factors as well as the
environment. Under a broader definition, genetic testing
may be hard to distinguish from other forms of predictive
testing such as blood pressure or cholesterol.
A life insurance policy is a contract between the policy-
holder and the insurer, designed to provide financial pro-
tection in the event of death. The specific provisions of the
contract cannot be altered by the insurer once the policy is
in force, unless agreed to in writing. While certain policies
are offered for a defined term (5, 10 or more years), many
last throughout the lifetime of the insured. Provided the
policyholder continues to pay the premiums, the policy
cannot be cancelled by the insurer.
To calculate the premium required to support the risk,
the insurer uses age, gender, health status, lifestyle and
family history. The insured is then assigned to a group of
other insureds with similar life risks. The premium is based
on the risk of dying within any future year. For example, a
policyholder will pay more with respect to an insured who
is 65 years of age rather than one who is 25 because the for-
mer’s probability of dying in any year is higher. Actuarial
experience shows that smokers have a shorter life ex-
pectancy than nonsmokers of the same age. Similar infor-
mation about the impact of certain genetic mutations is
The process of categorizing persons to be insured into
groups with similar risks is called underwriting. By its very
nature, this process discriminates between individuals but it
is designed to make people pay premiums according to
their individuals risk status. Those with like risks receive
similar underwriting treatment, and thus the policyholders
pay similar premiums.
Because underwriting may uncover impairments that re-
sult in increased premiums, it is not uncommon for pros-
pective policyholders or insureds to attempt to conceal un-
favourable information. This is known as adverse selection.
It could result in an applicant paying lower premiums and,
ultimately, in insurers paying out more.
Limited family history is requested on many insurance
applications. Usually the applicant or other person whose
life is to be insured is asked if his or her parents and siblings
are alive or dead and, if dead, what was their age and cause
of death. Information on health status (including medical
history, lab tests and doctors’ reports) and lifestyle (tobacco
and alcohol use) are maintained by the insurer in strict con-
fidence. Some medical data are reported to the Medical In-
formation Bureau (MIB). The MIB was established to
identify applicants who were rated or denied insurance be-
cause of a medical or other impairment and who then ap-
plied to a second company but withheld the information
which led to the adverse decision.
Finally, it is important to distinguish life insurance from
social security, disability insurance, unemployment insurance,
Genetics and life insurance in Canada:
points to consider
Bartha M. Knoppers, Trudo Lemmens, Béatrice Godard, Yann Joly, Denise Avard, Teren Clark,
Pavel Hamet, Michael Hoy, Sébastien Lanctôt, Sandy Lowden, Huguette Martin,
Christine Maugard, Yves Millette, Jacques Simard, Marie-Hélène Vachon, Frank Zinatelli
the Canadian pension plan, and the solidarity underlying
Canada’s universal health care system. The principal role of
life insurance is to provide income security for surviving
household members in the event of death. Life insurance is a
private contract based on selection and risk-spreading accord-
ing to risk of death of either a primary or secondary income
earner, or both.4,5 It is a contract aimed at offering some form
of financial security for unanticipated loss. Ninety percent of
applicants for life insurance are insured at standard rates.6
Many misconceptions surround the debate on life insur-
ance and genetics. The task force decided that it was im-
portant to put forward certain premises on which all mem-
bers could agree.
First of all, all individuals carry genes that make them
susceptible to diseases. Certain genes may modify risk or
protect from risk. Absent tests for single-gene disorders,
totally reliable genetic tests are not currently available on
the market. Yet, consumers are concerned that, in the fu-
ture, genetic testing will be used for reasons other than
medical purposes. They consider questions pertaining to
family history as less threatening than genetic testing.
There may, however, be an indirect pressure to undergo
genetic testing as a result of family history in order to influ-
ence rates. The potential pressure to undergo genetic test-
ing for commercial purposes is seen by many as problem-
atic. Dealing with predictive genetic information can be
cumbersome and is a personal decision that has to be made
in the context of health care. Genetic information necessar-
ily has familial repercussions. Understanding the signifi-
cance and impact of genetic testing results is difficult, and
therefore, at the present time, genetic information can
rarely be effectively used in risk assessment.
Second, life insurance is neither pre-paid health insur-
ance, nor pre-paid medical expenses or social security. Pri-
vate commercially based life insurance is valued by many
and plays an important role in our society. Life insurance is
often requested by a financial institution in order to obtain
loans or buy a house or car. For a rational policy on the use
of genetic information, it is important to determine how
restrictions would impact on industry.
Third, genetic information is perceived by the public to
be different than other forms of health information. Public
perception and concerns cannot be ignored or discounted.
There is both a lack of information as well as inaccurate in-
formation concerning the issues surrounding life insurance
and genetic tests. This does not offer a good basis for a de-
bate on risk assessment.
IV. Possible approaches
In spite of these misconceptions, current approaches for
reform have been put forward or followed in other countries:7
1. maintaining the status quo (the market will adjust pre-
miums as information emerges)
2. imposing a total prohibition via legislation on access to,
and/or use of, genetic information by insurers (based on
the premise that genetic information is different from
other medical information)
3. putting in place a system of regulatory review of the use
of new forms of testing and new forms of information,
including genetic information (a standing review com-
mission; ombudsman, etc.)
4. undertaking a moratorium (legislative or voluntary) on
insurers asking applicants for test results (an approach
that recognizes the lack of an actuarial base for the in-
terpretation of genetic test results)
5. promoting a proportionate approach where information
would be requested only if the amount of life insurance
exceeds the annual income of the applicant, or a thresh-
old approach (below a certain amount no questions
would be asked concerning genetic test results), and
6. strengthening privacy reforms (strengthening the pro-
tection afforded to medical information generally, and
thereby limiting access).
V. Points to consider
In examining the relevance or possible applicability of
these approaches to Canada, the task force noted that it is
difficult to distinguish diagnostic genetic testing from any
other medical test that gives a definite diagnosis of an exist-
ing medical condition. Predictive genetic tests on asympto-
matic people or using increasingly refined and informative
family histories to determine susceptibility, although neces-
sary for a better follow-up of at-risk individuals, raise con-
cerns. The task force came to the conclusion that genetic
testing and research is rapidly developing and is moving to-
ward genomics and proteomics. Thus, defining what is a
“genetic” test is difficult.
On the one hand, allowing insurers to use genetic tests
as a basis of risk-rating may result in some (high-risk) indi-
viduals being discouraged from purchasing “adequate” lev-
els of coverage because of having to pay substantially
higher prices for life insurance coverage. In this situation,
the role of life insurance as a means of income security for
surviving members may be unnecessarily restricted. On the
other hand, if regulation prohibits use of genetic test re-
sults, this could lead to adverse selection problems and sub-
stantial general price increases for life insurance. This may
be sufficient to deter all members of the insurance pool,
and in particular low-risk members, from purchasing ade-
quate levels of coverage. Again, the income security func-
tion of life insurance may be jeopardized.
During this current period of uncertainty, the public
fears participating in genetic research and diagnostic testing
owing to the possible impact of genetic information on in-
surability.8There is an urgent need for independent, rigor-
ous assessment of when new genetic information is suffi-
ciently valid to be used by insurers with actuarial fairness.
Knoppers et al
Online-2 JAMC • 27 AVR. 2004; 170 (9)
Genetics and life insurance in Canada
CMAJ • APR. 27, 2004; 170 (9) Online-3
Whatever model is to be adopted in Canada, actuarially
sound classification is important. At the same time, it is im-
portant to evaluate what the social and medical repercus-
sions of the use of this information will be. Public policy
considerations may impose additional restrictions on insur-
ance underwriting. These circumstances should be clarified,
when they exist, and restrictions should be the subject of
open debate. All elements, including the economic feasibil-
ity of such restrictions, should be taken into consideration.
In the context of genetic developments, it could be ar-
gued that additional efforts should be undertaken to ensure
that people can obtain access to life insurance; whether it
be by insurance organizations coming up with a proposal,
or government working together with insurance.
To that end, the task force agreed on the need to debate
the following two avenues:
A. Not use genetic test results (excluding family history)
for a set, moderate amount of insurance coverage for a
limited period of time (5 years). This amount and time
limit could be revised if warranted.
B. Create an independent standing body that includes
consumers, government, clinicians, industry and re-
searchers for ongoing review of criteria concerning the
reliability of genetic information for underwriting pur-
poses. This advisory body could also handle complaints
and queries from consumers.
Measures such as these would ensure an ongoing debate
on both the role of the life insurance industry and on the
meaning of genetic research, testing and information. Most
importantly, these two measures would stimulate discussion
in Canada on a subject that affects a value that Canadians
hold dear: the universal health care system. Canadians
should be able to avail themselves of the health benefits of
the genetic revolution without fear.
1. Government of Canada. Public opinion research into genetic privacy issues. Ottawa:
Pollara Research and Earnscliffe Research and Communications; 2003.
2. Canadian Life and Health Insurance Association Inc. Reference document:
CLHIA position statement on genetic testing. Toronto: The Association; 2000
(updated in 2003).
3. Dicke A. Genetic risk and voluntary insurance. Contingencies 1996;Sept/Oct:52-6.
4. Bernheim BD, Carman KC, Gokhale J, Kotlikoff LJ. The mismatch between life
insurance holdings and financial vulnerabilities: evidence from the Survey of Con-
sumer Finances. Cambridge (MA): National Bureau of Economic Research,
Inc.; 2001. NBER Working Paper 8544.
5. Bernheim BD, Forni L, Gokhale J, Kotlikoff LJ. The mismatch between life
insurance holdings and financial vulnerabilities: evidence from the Health and
Retirement Study. Am Economic Rev 2003;93(1):354-65.
6. Canadian Institute of Actuaries. Statement on genetic testing and insurance. Ottawa:
The Institute; 2000. Available: www.actuaries.ca/publications/2000/20065e.pdf
(accessed 2002 Aug 1).
7. Lemmens T, Joly Y, Knoppers BM. Genetics and life insurance: a compara-
tive analysis. GenEdit 2004;3. Available: www.humgen.umontreal.ca/en
8. Martin H. Assurance et tests génétiques. La voie d’expression des femmes 2003;8(2):3.
Affiliations:Genetics and Society Project, Université de Montréal, Montréal, Que.
(Knoppers, Godard, Joly, Avard, Vachon); University of Toronto, Toronto, Ont.
(Lemmens); Centre hospitalier de l’Université de Montréal, Montréal, Que.
(Hamet, Maugard); University of Guelph, Guelph, Ont. (Hoy); Heenan Blaikie
law firm, Montréal, Que. (Lanctôt); Muscular Dystrophy Canada (Clark); LabOne
Canada Inc., Markham, Ont. (Lowden); Réseau québécois pour la santé du sein,
Montréal, Que. (Martin); the Canadian Life and Health Insurance Association Inc.
(Millette, Zinatelli); Université Laval, Québec, Que. (Simard); INHERIT BRCAs
Project (Knoppers, Godard, Joly, Avard, Simard, Vachon)
The authors are members of the Canadian Genetics and Life Insurance Task
Force. Bartha Knoppers is chair, Trudo Lemmens and Béatrice Godard are co-
chairs, and Yann Joly is coordinator of the task force.
Acknowledgements:Research funding for the Canadian Genetics and Life Insur-
ance Task Force came from the Canadian Institutes of Health Research, Genome
Quebec, the Ontario Genomics Institute and Genome Canada.