GENETIC TESTING AND ACCESS TO INSURANCE. Drs. Eveline Goessens Ius Commune 2013

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1 GENETIC TESTING AND ACCESS TO INSURANCE Drs. Eveline Goessens Ius Commune 2013

2 OVERVIEW I. Introduction: genetic heterogeneity in insurance profiling II. What is to be understood by - Genetic testing - Private insurance rationale Problematization III. Relevant European and international rules and standards IV. Different national approaches: three countries examined V. Is there an optimal system? VI. Concluding remarks

3 II. WHAT IS TO BE UNDERSTOOD BY Genetic testing Definition Genetic tests Non-genetic examinations Monogenetic disorders Multifactorial diseases

4 II. WHAT IS TO BE UNDERSTOOD BY Private insurance rationale The right to underwrite Uberrima fides

5 II. PROBLEMATIZATION The right to underwrite Insurer s perspective: actuarial fairness Applicant s perspective: discrimination Uberrima fides Asymmetry of information Subsidizing solidarity Subsidy-aversion (Regulatory) adverse selection

6 III. EUROPEAN AND INTERNATIONAL RULES AND STANDARDS Exponential growth of genetic testing: concerns on national/international level Difference between - request of insurer to undergo genetic testing: genetic testing as a precondition to insurance - request to provide the outcome of a previous genetic test: - people may feel inhibited to undergo test (-) - applicants can provide good test results (+)

7 III. EUROPEAN AND INTERNATIONAL RULES AND STANDARDS Council of Europe Recommendation No. R(1992)3 of the Committee of Ministers on genetic testing and screening for health-care purposes - Principle 7: Insurers should not have the right to require genetic testing or to inquire about results of previously performed tests, as a pre-condition for the conclusion or modification of an insurance contract - Adopted by all Council of Europe members (except the Netherlands), but soft law Unesco Universal Declaration on the Human Genome and Human Rights (1997) / European Union, Charter of Fundamental Rights of the European Union, article 21 (2000) - No one shall be subject to discrimination based on genetic characteristics

8 III. EUROPEAN AND INTERNATIONAL RULES AND STANDARDS Council of Europe Convention on Human Rights and Biomedicine (1997) - Any form of discrimination on grounds of genetic heritage is prohibited - Predictive genetic tests may be performed only for health purposes or for scientific research. No insurance purposes - No prohibition for insurer to ask for existing results of predictive genetic test - U.K. and Belgium did not ratify the Convention

9 III. EUROPEAN AND INTERNATIONAL RULES AND STANDARDS Additional Protocol to the Convention on Human Rights and Biomedicine concerning genetic testing for health purposes (2008) Ongoing preparations for an additional Protocol to the Convention for (employment and) insurance purposes Council of Europe Recommendation No. R(2002)9 of the Committee of Ministers on the protection of personal data collected and processed for insurance purposes

10 III. EUROPEAN AND INTERNATIONAL RULES AND STANDARDS Most European and International rules and standards: - Not formally binding / soft law - But might be able to influence the development of new legally binding rules or standards - Eg UNESCO Declaration endorsed by UNGA in resolution: potential effect on the formation of customary international law Consensus in Europe: predictive genetic testing may not be performed for insurance purposes

11 IV. DIFFERENT NATIONAL APPROACHES TO THE GENETIC CHALLENGE Ban by law Limitation by law - to some forms of insurance - below a certain amount insured Moratorium - voluntary agreement amongst insurers not to use genetic data

12 BELGIUM Law on terrestrial insurance contracts (1992): Ban Prohibition to request applicants to undergo genetic testing Prohibition to request or use genetic test results (+ in practice: prohibition to inquire about family history) Applicant is prohibited from giving information, even if it would be to his benefit criticism Ratio legis of law: - Right to privacy - Protection of social solidarity (against genetic discrimination)

13 THE NETHERLANDS Medical Examinations Act (1997): limitation by law Prohibition to request applicants to undergo genetic testing Prohibition to request or use genetic test results if total amount insured is below a certain threshold Ratio legis: Access to socially important facilities, such as insurance

14 THE UNITED KINGDOM Concordat and Moratorium of Genetics and Insurance: Moratorium (until 1/11/2017) Voluntary agreement between government and ABI Prohibition to request applicants to undergo genetic testing Prohibition to request or use genetic test results if total amount insured is under a certain threshold No prohibition to inquire about family history! Above threshold: only if genetic test is assessed by panel of experts Ratio legis: balance between interests insurer and applicant

15 DIFFERENT APPROACH DIFFERENT VIEW ON SOCIAL ROLE OF INSURANCE Belgium: appears to be most protective of applicant, but - no possibility of providing good genetic test result - (family history?) Netherlands: no protection above certain amount, but - access to insurance for everyone (higher amounts insured are not social ) - possibility of providing good genetic test result U.K.: no protection above certain amount - balance between access to insurance and access to relevant information for insurer - no legal certainty for insured - family history is not protected

16 V. IS THERE AN OPTIMAL SYSTEM? reconciling social role of insurance with risk-rating rationale Ceiling system of The Netherlands and the U.K. - Response to danger of adverse selection - Permits the acquisition of social goods such as healthcare or housing Moratorium combined with board of examination to assess actuarial validity of genetic tests - Can react to changing situations Danger of voluntary and temporary character of moratorium Need for legislative framework? If family history is not protected, no true protection of genetic data

17 VI. CONCLUDING REMARKS It is common insurance best practice not to ask applicants to undergo predictive genetic testing Tendency towards legislation in Europe with sum insured limit regarding genetic information but questions on family history Increased acceptance of the need for access to social benefits where these systems are insurance-based Social demands on insurance are on the rise