Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of ‘big data’. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The (...) main purpose of the register was to enable future research into the consequences of ritual circumcision. This article is a study into the case of the Danish Circumcision Registry. We show that such a registry may lead to various forms of harm such as 1) overreaching social pressure, 2) stigmatization, 3) medicalization of a religious practice, 4) discrimination, and 5) polarised research, and that a person may therefore have a strong and legitimate interest in deciding whether or not such data should be collected and/or used in research. This casts doubt on the claim that the requirement of informed consent could and should be waived for all types of secondary research into registries. We finally sketch a new model of informed consent – Meta consent – aimed at striking a balance between the interests in promoting research and at the same time protecting the individual. Research participants may have a strong and legitimate interest in deciding whether or not their data should be collected and used for registry-based research whether or not their data is anonymised. (shrink)

Male circumcision—partial or total removal of the penile prepuce—has been proposed as a public health measure in Sub-Saharan Africa, based on the results of three randomized control trials showing a relative risk reduction of approximately 60 per cent for voluntary, adult male circumcision against female-to-male human immunodeficiency virus transmission in that context. More recently, long-time advocates of infant male circumcision have argued that these findings justify involuntary circumcision of babies and children in dissimilar public health environments, such as the USA, (...) Australasia and Europe. In this article, we take a close look at the necessary ethical and empirical steps that would be needed to bridge the gap between the African RCTs and responsible public health policy in developed countries. In the course of doing so, we discuss some of the main disagreements about the moral permissibility of performing a nontherapeutic surgery on a child to benefit potential future sexual partners of his. In this context, we raise concerns not only about weaknesses in the available evidence concerning such claims of benefit, but also about a child’s moral interest in future autonomy and the preservation of his bodily integrity. We conclude that circumcision of minors in developed countries on public health grounds is much harder to justify than proponents of the surgery suggest. (shrink)