Paper short abstract:

We report on two case studies on childbirth and parenting in Spain: Umbilical Cord Blood Banking and mastitis. Though there are here no patient organizations, both imply practices of associating and sharing knowledge with others, and both lead mothers to participate in “circuits of vitality”

Paper long abstract:

STS scholarship on patient participation has focused on formal organizations, not the least because their growing relevance as legitimate actors to be consulted in the design of medical research and therapies provides an interesting access point to the changing relations between expert and lay knowledges in current technoscience (Epstein, 1996; Callon and Rabeharisoa, 2003; Akrich, 2010). But not all forms of patient participation are channeled through formal associations. In this communication we report on two case studies which dealt with health decisions related to childbirth and parenting in Spain: Umbilical Cord Blood Banking (UCB) and mastitis during breastfeeding. Though in these two cases there are hardly any patient association or forms of "childbirth activism" (Akrich et.al, 2014) to channel participation, both imply practices of associating and sharing knowledge with others, and both lead mothers to take part as donors/consumers in different "circuits of vitality" (Rose, 2007) - the stem cell bioeconomy, in the case of UCB; pharmaceutical research, in mastitis. By attending to the more fluid and subtle forms of participation that mothers thinking of preserving UCB or suffering from mastitis get involved in, we propose a wider understanding of patient participation as "activation of care". We are particularly interested in emerging forms of biosociality in digital environments (online communities, digital forums, Whatsapp groups), where caring is deeply entangled with economic considerations, moral imperatives and gender and class inequalities.