Abstract

Socially responsible publishers, such as the BMJ Publishing Group, have demonstrated a commitment to health equity and working towards rectifying the structural racism that exists both in healthcare and in medical publishing.1 The commitment of academic publishers to collecting information relevant to promoting equity and diversity is important and commendable where it leads to that result.2 However, collecting sensitive demographic data is not a morally neutral activity. Rather, it carries with it both known and potential risks. Among these are issues around privacy or data misuse, as well as more basic concerns about how, when or why people should be categorised in certain ways and/or prompted to conceive of themselves or their identities in certain terms.3 If such data are to be collected, therefore, their effectiveness in achieving the stated ends must have a sufficiently compelling evidence base so as to justify the various risks involved. And where possible, these risks must also be identified and minimised. As Varcoe et al 4 argue, > While most leaders and healthcare workers and some patients [in their study] envisioned potential benefits associated with having ethnicity data, these benefits were seen as largely contingent upon action being taken to [actually] ameliorate inequities. Overwhelmingly, however, leaders from ethno-cultural communities and patients of diverse identities anticipated potential harm arising both from having ethnicity data and the process of collection. The analysis illustrates that in today’s sociopolitical context, collecting ethnicity data in clinical contexts may engender considerable harm, particularly for racialized, vulnerable patients. (p1569) Varcoe et al refer to ‘ethnicity’ data, which as they note is an ambiguous concept, potentially encompassing such diverse notions as ancestry, language, religion or culture. It is also a term that is in some contexts—for example, the USA—often used interchangeably with a different, more highly charged term: ‘race’. Data …