Limited relevance of the right not to know--reflections on a screening study

Abstract

The right not to know personal health-related information has been included in prominent human rights documents and subsequently in national legislation since the middle of the 1990s. Apart from situations where another life is at stake, the right not to know has in these documents been formulated as if it should have precedence over other interests. This article argues against giving the right not to know such a prominent position. It does so by questioning the ethical relevance of the concept for both theoretical and empirical reasons. The main focus of the article is on empirical data from a prospective population screeningfor Type I diabetes. Data indicate that research participants are not as autonomous as is generally assumed by the defenders of the right not to know.