Ethical review and health information

Abstract

The law on ethical review postulates that sensitive personal information requires approval from the Swedish Ethical Review Authority. Exactly what personal information should be deemed sensitive is unclear, not least regarding health. The aim of the article is to discuss what kind of information should be seen as sensitive.

The law should only be concerned with ill health, not positive health. Further, ill health should be regarded as more than the absence of disease or injury, even if these conditions should be covered by the law. Two possibilities are considered: ill health as reduced subjective well-being and as reduced functional ability. Finally, we discuss whether the law should cover indicators of ill health or determinants of/risk factors for ill health, and we conclude that the indicators should normally be included, whereas information about risk factors should be considered sensitive only in exceptional cases.