Europe moves to prevent genetic discrimination and insurance

Dr Philippa BriceFriday, 28 October 2016

The Council of Europe has called on member states to strengthen the protection of health-related and genetic data held by insurance companies.

A new Recommendation has been adopted that seeks to protect the rights of people whose personal data are processed for insurance purposes . It is said to take into 'account insurance companies legitimate interest in assessing the level of risk presented by the insured person’ alongside safeguards for the collection and processing of relevant health-related personal data, based on the insured person’s consent. In particular, it is concerned with facilitating affordable access to health insurance for ’persons presenting an increased health risk’.

The Recommendation also proposes that genetic tests for the purposes of insurance (that is, obliging prospective customers to undergo predictive genetic tests) should be banned, although the UK is not obliged to enact the Council’s proposal. It requires justification of any use of family history or pre-existing genetic test results in calculating risk.

Most insurers in the UK currently operate under a voluntary moratorium agreed between the Association of British Insurers (ABI) and the government. This prohibits the use of data from genetic testing results for health or life insurance (with the exception of high-value policies and the dominantly inherited, very high penetrance condition Huntingdon’s Disease) This was first agreed in 2001 and currently extending until 2019

Secretary General Jagland commented: “People’s health and genetic data are highly sensitive and must be properly protected. Governments have duty to ensure nobody is discriminated on the grounds of his or her genetic characteristics”.

Dr Mark Bale, chair of the Council of Europe’s Committee on Bioethics, which developed the new Recommendation, observed that: “What we wanted to try and do was to balance the human rights about personal data as well as the interests of the insurers”.

In the US, the 2008 Genetic Information Nondiscrimination Act (GINA) - which applies to health insurance - prohibits discrimination against citizens with respect to employment or insurance on the basis of genetic information, whilst similar legislation to introduce a Genetic Non-Discrim ination Act is currently passing through the Canadian parliament.