1. PREDICTIVE TESTING AND INSURANCE LAW

2. Summary: ① Predictive Tests ② Insured Perspective ③ Insurers perspective ④ Legislation

3. PREDICTIVE TESTS

4. Predictive genetic testing is the use of a genetic test in an asymptomatic person to predict future risk of disease. The results of predictive and presymptomatic testing can provide information about a person’s risk of developing a specific disorder and help with making decisions about medical care.

5. PREDICTIVE TESTS It was this ability to prognosis, PREDICTING FUTURE RISKS and diseases that aroused the interest of insurance companies This kind of information would enable (insurers) to evaluate more effectively the insured

6. INSURED PERSPECTIVE

7. National Institute of Health (USA) made a study about the reaction of people to the possibility of the insurance companies have access to their genetic data.

8. PEOPLE’S CONCERNS – CONCLUSIONS Those who knew that probably would suffer from a serious disease or ill, would buy all types of insurances. Biggest concern: possibility of discrimination considering that if Insurance companies had access to this kind of information, they would increase exponentially the premiums or even exclude some people Almost everyone opposed to this be a compulsory require to access insurance

9. DISCRIMINATION Hypothesis: Possibility of having someone healthy excluded of insurance based on the results of a predictive test. Being that this illness may not even come to manifest itself as it is a mere probability

10. INSURED PERSPECTIVE Rise the question: Can the insurance companies submit their candidates to such tests?

11. INSURED PERSPECTIVE “ The main issue is in respecting the right of not knowing. In this field of predictive genetic testing, those types of information's can generate greater emotional and psychological instability.” – LUÍS ARCHER The right of not-knowing should prevail over the interest of the insurers.

12. INSURED PERSPECTIVE And those who have taken predictive genetic tests? all individuals who have taken this tests should reveal the results to their insures principle of good faith and the duty of information

13. INSURED PERSPECTIVE TWO CONSEQUENCES: 1.Discrimination based on the different treatment of two clients with the same genetic problem 2.Many people don't do it because they are afraid of insures reaction

14. INSURED PERSPECTIVE According to Prof Guilherme de Oliveira: “ it's certain that the duty of information is essential to the risk management, but it's also true that the personal data given by the candidates to insurers is already a VIOLATION OF THE PRINCIPLE OF PRIVATE INTIMACY, and those information must be reduced to the essential.”

15. INSURED PERSPECTIVE The impact of predictive genetic results: Genetic disease is a condition that no one can fight against Distressing for the carrier of the genetic disorder and for his family PROTECTION OF PRIVACY AND CONFIDENTIALITY IS FUNDAMENTAL AND MUST BE KEPT AWAY FROM THIRD PARTIES PROTECTION OF PRIVACY AND CONFIDENTIALITY IS FUNDAMENTAL AND MUST BE KEPT AWAY FROM THIRD PARTIES

16. INSURED PERSPECTIVE Here discrimination is based on genetic caracteristics and unlike the others this is not visible to the “naked eye”

17. INSURERS PERSPECTIVE

18. “Economic product”Protect their own economic future InsuranceConsumers Ensure the future of those who depend on him

19. INSURERS PERSPECTIVE Risk Evaluation 1. Evaluate a number of factors (smoker, poor diet) 2. That could influence and decrease average life expectancy Through this they calculate the premium

20. INSURERS PERSPECTIVE More precise and fair the Premium will be! The more information Insurers have about their candidates

21. INSURERS PERSPECTIVE Predictive genetic tests are extremely useful: fair premiums and adequate to the insured’s reality Insurers need to calculate properly the risks of any candidate or else the prices will increase to compensate all the unfair indemnities paid to the less healthy

22. INSURERS PERSPECTIVE

23. Use of predictive genetic tests to avoid “adverse selection” Adverse Selection If individuals discover that they are very likely to suffer from a serious disease, they might purchase a Great deal of insurance

24. LEGISLATION

25. Law 12/2005 Portugal “Insurers cannot ask for predictive genetic tests or use any type of genetic data to deny insurance or establish higher premiums”

26. LEGISLATION Universal declaration of human genome and the human rights (1997) UNESCO Article 6: “No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.” Include genetics in the traditional concept of DISCRIMINATION

27. LEGISLATION Council of Europe Convention on human rights and biomedicine (1997) Article 12: Predictive genetic tests Limits the use of genetic data to health or scientific research. Insurers CANNOT USE THIS TYPE OF DATA Article 12: Predictive genetic tests Limits the use of genetic data to health or scientific research. Insurers CANNOT USE THIS TYPE OF DATA

28. LEGISLATION Council of Europe Convention on human rights and biomedicine (1997) Article 12: Predictive genetic tests “Tests which are predictive of genetic diseases or which serve either to identify the subject as a carrier of a gene responsible for a disease or to detect a genetic predisposition or susceptibility to a disease may be performed only for health purposes or for scientific research linked to health purposes, and subject to appropriate genetic counselling”.

29. LEGISLATION WHO (World Health Organization) PROPOSED GUIDELINES on ethical issues in medical genetic on genetic services (1998)

30. LEGISLATION “ employers, insures, schools, government agencies or other institutional third parties SHOULD NOT BE GIVEN access to predictive test results WITHOUT THE INDIVIDUAL’S CONSENT in order to avoid discrimination”. WHO (World Health Organization) Consent must be VOLUNTARY

31. LEGISLATION Since 2008 USA GINA – GENETIC INFORMATION NON DISCRIMINATION ACT – TITLE 1

32. LEGISLATION UK GOVERNMENT PACT INSURERS ASSOCIATION (ABI) Lasts until 2014

33. LEGISLATION Main principles of the “MORATORIUM”: UK 1.Applicants will not be asked to, nor be part under any pressure to, undergo a predictive test in order to obtain insurance. 2.Insures may only take into account results of these predictive genetic tests, that GAIC´s body (Genetic and insurance Committee) as decided are technically, clinically, and actuarially relevant. 3.There must be no increase in the premiums or worsening in the terms an Insurer offers, arising from such test, unless GAIC as decided that an adverse predictive genetic result is technically, clinically, and actuarially relevant for insurance purpose.

34. LEGISLATION GAIC AUTHORIZATI ON GAIC AUTHORIZATI ON UK if EXCEED 500000 pounds in case of death if EXCEED 3 00000 pounds in case of critical disease Exception: