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Genetic information, private
insurance and human rights
Piet Calcoen, MD, LLM
Emeritiforum KU Leuven
Leuven, November 29, 2012
Belgium
• A strict view regarding the use of genetic
information for insurance purposes
• Any use of genetic information is forbidden
• Article 5 of the law on insurance contracts (Wet
op de landverzekeringsovereenkomst / Loi sur le
contrat d’assurance terrestre): “genetic data may
not be communicated”
Belgium
• Article 95 of the law on insurance contracts: “no
genetic testing may be used when examining a
(candidate-) insured”
• Result: absolute prohibition of the use of genetic
data by the insurance sector
Another view in some other
countries
• If the insured benefit exceeds a certain sum, the
insurer can use genetic information
• Netherlands: ~ €250,000 threshold for life
insurance and ~ €30,000 threshold for income
protection policies (cf. article 5 “Wet op de
medische keuringen”, July 5, 1997)
Netherlands
• 1. Bij een keuring in verband met het aangaan of
wijzigen van een verzekering mogen geen vragen
worden gesteld […] voor zover die op erfelijkheid
betrekking hebben […] Bij de behandeling van de
aanvragen voor het aangaan of wijzigen van een
verzekering en bij een keuring in dat verband
mogen geen uit andere hoofde reeds bij de
keuringvrager, de keurend arts of geneeskundig
adviseur aanwezige erfelijke gegevens over de
aspirant verzekerde en diens bloedverwanten
worden gebruikt.
Netherlands
• 2. Voor arbeidsongeschiktheidsverzekeringen […]
bedraagt de vragengrens € 36 249,– voor het
eerste jaar van arbeidsongeschiktheid en
€ 24 267,– voor de daaropvolgende jaren van
arbeidsongeschiktheid. Voor levensverzekeringen
bedraagt de vragengrens € 250 000. Bedoelde
bedragen worden elke drie jaar bij ministeriële
regeling aangepast aan de consumentenprijsindex.
United Kingdom
The moratorium installed by the Association of
British Insurers (ABI) means the results of a
predictive genetic test will not affect a consumer’s
ability to take out any type of insurance other than
life insurance over £500,000. Above this amount,
insurers will not use adverse predictive genetic
test results unless the test has been specifically
approved by the Genetics and Insurance
Committee (GAIC). Only around 3% of all
policies sold are above these limits. The only test
that is approved is for Huntington’s Disease.
United Kingdom: GAIC
• Is the test technically reliable? Does it accurately
detect the specific changes sought for the named
condition? This is the technical relevance of the
test.
• Does a positive result in the test have any
implications for the health of the individual? This
is the clinical relevance of the test.
• Do these health implications make any difference
to the likelihood of a claim under the proposed
insurance product? This is the actuarial relevance
of the test.
Absolute prohibition
• Genetic data
– highly personal, unchangeable information
– about the life of the individual but also about the life of
his ancestors, descendants and other relatives
• A division between the “genetic good” and the
“genetic bad” in society
• Confronting a person with information about his
future might be hard to cope with for that person
and his relatives.
Relative prohibition
• Asymmetric information relationship between
insurer and (candidate-) insured
• Anti-selection behaviour
• Would it be desirable from a societal point of view
that a person, who knows that he will die within 5
to 10 years time, can take out a €1,000,000 life
insurance contract while withholding this
information from his insurer?
Relative prohibition
• Uncertainty about the realization of the risk = key
element of the insurance contract.
• “A burning house cannot be insured”
Discussion
• Richard Ashcroft, biomedical ethicist, Queen
Mary, University of London (2008): “it is
important to note how genetic information can be
misunderstood, or its importance overestimated,
and therefore used in discriminatory ways that
would no be justified on sound actuarial grounds”
• E.g. BRCA1 gene in breast cancer:
– Little difference to a woman’s life expectancy
– Cave interpretation as a grave risk of early death by an
insurance company
Discussion
• When a positive test for a “disease gene” does not
imply that the illness is certain  there is
uncertainty about the manifestation of the risk 
is the risk insurable?  yes
• When a positive test for a “disease gene” implies
that the illness is certain  there is certainty about
the manifestation of the risk  is the risk
insurable?  no
Discussion
• Clear distinction:
– Medical information, which may be used by insurers
– Genetic information, which may not be used by insurers
• Distinction?:
– Smoking: 10-20% life time risk of developing lung
cancer (nonsmokers: 1.4%)  used by health insurers
– BRCA1+2 genes: 60-80% risk to develop breast cancer
before age 70 (6 to 8 times higher risk)  not used by
health insurers
Discussion
• Question: what medical information can insurance
companies take into consideration?
• Answer:
– Complexity (life insurance ≠ health insurance ≠ income
protection)
– Cave anti-selection (uncertainty is key element)
– Societal choices
• Quid e.g. evolution towards an insurance system
where higher premiums are being asked for “bad
behaviour” rather than for “bad risks” a person has
no impact on? (Quid stimulating prevention?)