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 € ,– voor het eerste jaar van arbeidsongeschiktheid en € ,– voor de daaropvolgende jaren van arbeidsongeschiktheid. Voor levensverzekeringen bedraagt de vragengrens € 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?)