PREDICTIVE TESTING AND INSURANCE LAW PREDICTIVE TESTING

PREDICTIVE TESTING AND INSURANCE LAW

PREDICTIVE TESTING AND INSURANCE LAW Summary: ① Predictive Tests ② Insured Perspective ③ Insurers perspective ④ Legislation

PREDICTIVE TESTS

PREDICTIVE TESTS 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.

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

INSURED PERSPECTIVE

INSURED PERSPECTIVE 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.

PEOPLE’S CONCERNS – CONCLUSIONS 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 Those who knew that probably would suffer from a serious disease or ill, would buy all types of insurances. Almost everyone opposed to this be a compulsory require to access insurance

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

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

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.

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

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

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. ”

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

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

INSURERS PERSPECTIVE

INSURERS PERSPECTIVE Insurance “Economic product” Consumers Protect their own economic future Ensure the future of those who depend on him

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

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

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

INSURERS PERSPECTIVE THAT’S WHY DISCRIMINATION IS WHEN TWO PEOPLE EQUAL ARE TREATED DIFFERENTLY, OR IN OTHER WORDS, WHEN TWO INSURED HAVE DIFFERENT RISKS AND PAY THE SAME PRIZE.

INSURERS PERSPECTIVE 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

LEGISLATION

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

LEGISLATION UNESCO Universal declaration of human genome and the human rights (1997) 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

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

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”.

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

LEGISLATION WHO (World Health Organization) “ 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”. Consent must be VOLUNTARY

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

LEGISLATION UK Lasts until 2014 “Moratorium” PACT INSURERS ASSOCIATION (ABI) GOVERNMENT

LEGISLATION UK Main principles of the “MORATORIUM”: 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.

LEGISLATION UK Exception: if EXCEED 500000 pounds in case of death if EXCEED 300000 pounds in case of critical disease GAIC AUTHORIZATI ON