Juggling on a rollercoaster? Gains, loss and uncertainties in IVF patients' accounts of volunteering for a U.K. ‘egg sharing for research’ scheme

Abstract

The past decade has seen a growth in demand for human eggs for stem cell related research and, more recently, for mitochondrial research. That demand has been accompanied by global debates over whether women should be encouraged, by offers of payments, in cash or kind, to provide eggs. Few of these debates have been informed by empirical evidence, let alone by the views of women themselves. This article addresses that gap in knowledge by presenting findings from a UK investigation, conducted 2008–2011, which is the first systematic study of women volunteering to provide eggs under such circumstances. This article focuses on the views and experiences of 25 IVF patients who volunteered for the Newcastle ‘egg sharing for research’ scheme (NESR), in exchange for reduced IVF fees. This was an interview based study, designed to gain understandings of volunteers' perspectives and reasoning. The interviews show that volunteers approached the scheme as a way of accessing more treatment in pursuit of their goal of having a baby, against a landscape of inadequate state provision of treatment and expensive private treatment. The process of deciding to volunteer raised a wide range of uncertainties about the consequent gains and losses, for women already in the uncertain world of the ‘IVF rollercoaster’. However, interviewees preferred to have the option of the NESR, than not, and they juggled the numerous uncertainties with skill and resilience. The article is as revealing of the ongoing challenges of the UK IVF bio-economy as it is of egg provision. This article adds to the growing body of knowledge of the contributions of tissue providers to the global bio-economy. It also contributes to several areas of wider sociological interest, including debates on the social management of ‘uncertainty’ and discussions at the interface of sociology and ethics.

What Is the Bioeconomy? A Review of the Literature

“…Reflecting the focus on and concern for sustainability, the literature on the bioeconomy also contains tensions and critical voices to the focus on economic growth and commercialisation in the bio-technology and in the bio-resource visions. In the literature on health there are several contributions that criticise the commercialisation of bio-resources in areas such as trade in various forms of human tissues (examples of such criticism include questioning trade in cord-blood [62][63][64][65], oocytes [66][67][68], foetal tissue [69], stem cells [70], femoral head [71], or blood [72,73]. Examples of topics that are discussed are the ethics of commercialisation of bioresources [74], safety in blood supply [72], inequalities in access to bio-resources [75], or moral dilemmas of surrogacy [67]).…”

Mitochondrial donation, patient engagement and narratives of hope

“…Franklin describes how women and couples trying to have a child using IVF therefore need to carefully 'manage' their hope, while caught in cycles of optimism and disappointment. It requires 'balancing sufficient measure of hope against a realistic appraisal of the likelihood of failure' (Franklin 1997: 158), in order to be able to continue and cope with this emotionally laden procedure (Haimes 2013). Ultimately, attempting conception with assisted reproductive technologies appears compelling for many individuals as it enables them to 'exhaust' this hope and prevent future possible regret (Tymstra 1989).…”

Sharpening the cutting edge: additional considerations for the UK debates on embryonic interventions for mitochondrial diseases

“…The commitment of time, energy and generosity required from the egg providers and the invasiveness of the procedure through which the eggs are produced and collected for use in research or treatment were all but ignored. (For further discussion see Baylis 2013, Haimes 2013, Haimes and Taylor 2013). …”