Between Secret and Public Exposure through Patients' Organisations: The Double Moral Injunction of Infertile Couples Using Medically Assisted Procreation with a Third-Party Donor

Public debate and the involvement of patient organisations are important dynamics that must be taken into account to understand the definition and regulation of standards and guidelines on some of the most controversial technical and medical issues. In this paper, I seek to analyze the major role of infertile couples, especially the engagement of women through the Portuguese Fertility Association, for the promotion of access to Medically Assisted Procreation (MAP) with a third-party donor. Although the right to privacy on intimacy, for fear of stigma and social discrimination by the family and work colleagues, the association members also assert their right to participate actively in the fight against the lack of both information and donor gametes. By associative engagement, as a political requirement, the women interviewed mobilize their private world to claim their health and citizenship rights (struggle for recognition). Their critical participation in public causes is based on the proximity created by attachments and crossed by similar care pathways: the discovery of being infertile and the need for a third-party donor to become a parent. Searching for information and sharing personal experiences via online forums of infertility associations, as well as the public visibility in the media, are transforming the relationship between, on the one hand, “experts” (politicians, ethics committees and doctors) who design and implement infertility treatments and, on the other hand, “laypeople” (beneficiaries). The civic potential of Internet and media for a collective mobilization in the public sphere, according to a new archetype of participatory democracy, contributes to a different form of relationship between politics, media and civil society. Building upon my post-doctoral research on controversies, tensions and discomfort around MAP with a third-party donor, I will approach this problem theoretically and empirically, based on the analysis of online discussion forums and in-depth interviews with infertility patients.