Informed Consent and Fresh Egg Donation for Stem Cell Research

Abstract

This article develops a model of informed consent for fresh oöcyte donation for stem cell research, during in vitro fertilisation (IVF), by building on the importance of patients' embodied experience. Informed consent typically focuses on the disclosure of material information. Yet this approach does not incorporate the embodied knowledge that patients acquire through lived experience. Drawing on interview data from 35 patients and health professionals in an IVF clinic in Australia, our study demonstrates the uncertainty of IVF treatment, and the tendency for patients to overestimate their chances of success prior to the experience of treatment. Once in active treatment, however, patients identify their oöcytes as both precious and precarious. We argue that it is necessary to formally include embodied experience as a source of knowledge in informed consent procedures, both for gratuitous donation and for egg-sharing regimes. We recommend that at least one full cycle of IVF be completed before approaching women to divert eggs away from their own fertility treatment.

“Ultimately, mom has the call”: Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy

“…Patients in this study reflected on their personal philosophies, characteristics and life‐experiences as contributing to CT participation decision making. They also drew on the experiences of other patients with cancer to facilitate or justify their decisions to participate in a CT, as has been established elsewhere …”

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

“…For example, on the question of informed consent, we have seen that interviewees invoked their previous experience of IVF (being one of the few certainties in IVF) to explain to themselves what it was they were volunteering to do. One could argue that their abilities to act autonomously, and to give better informed consent, would be compromised less by the offer of reduced fees and more by the lack of previous treatment (Carroll & Waldby, 2012; Haimes & Taylor, 2009). As Plows (2011:51) argues, we need to consider the ‘broader political and social background against which informed consent in a specific context is given by a specific woman’.…”

“The angel of the house” in the realm of ART: feminist approach to oocyte and spare embryo donation for research

“…The progress in ART has been accompanied by a hot debate concerning its perspectives and moral controversies. Nevertheless, even if in the last years there have emerged several works whose authors addressed the possible threats ART poses to women (Carroll and Waldby 2012; Cohen 2007; Jayaprakasan et al 2007; Nuffield Council on Bioethics 2011; Waldby 2008; Widdows 2010), these issues still have gained relatively lesser interest than other aspects. In our paper we are having a closer look at the problem of the forms of possible coercion women undergoing ART may face.…”

“…Although some forms of possible exploitation and specifically coercion affecting women undergoing in vitro fertilization (IVF) have already been recognized and discussed (Donchin 1996; Purdy 1996) the majority of authors have pointed out only the fact that women’s decision to undergo IVF may not necessarily reflect their genuine needs. Apart from some notable exceptions (Carroll and Waldby 2012; Haimes et al 2012; Scully et al 2012; Waldby 2008), there has been almost no debate concerning detrimental outcomes resulting from IVF procedure offshoot that is oocyte and spare embryo donation for stem cell research. As Donna Dickenson notes, women often “become invisible in these procedures” (Dickenson 2003, p. 143).…”