Saturday, February 03, 2007

Germany's National Ethics Council publishes opinion on privacy and health information

Germany's National Ethics Council has published an opinion setting out guidelines about privacy rights and health information, warning against private health insurance companies demanding ever more detailed diagnostics from new customers.

The 55 page opinion (English language version probably soon available here) argues that private health insurance companies' desire to know ever more about their customers' current state of health before offering them protection has to be balanced against the individual's privacy rights. While the Council acknowledges that insurance companies have a legitimate interest to know about the risks they are taking on, it argues that individuals also have rights that must be protected. It is especially (but not only) modern genetic diagnostics that makes prediction of an individual's future health trajectory possible. While this information can be used to engage in preventative measures, it can also be used to exclude individuals from health insurance.

The Council thus argues that the amount of information requested must be proportional to the protection offered — for very high levels of insurance, higher information requirements are acceptable. Problems arise, however, if individuals seeking normal levels of protection are subjected to tests that may lead to information the individual would prefer not to have — such as knowledge about an incurable disease that will afflict them in the future. Individuals, the Council argues, also have a right to ignorance that must be taken into account. The Council links this to the "right to informational self-determination" established by the German Constitutional Court and consequently advocates restrictions on insurance companies' information requirements.

Social science analysis of insurance has always pointed out problems of information asymmetry and adverse selection. The Council's opinion (which has only consultative force) highlights the fact that these issues must be revisited and given special attention in the light of new diagnostic methods and information technology, and that individual rights must be carefully balanced against corporate (and state!) interests of cost reduction.

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