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Informed Consent and Fresh Egg Donation for Stem Cell Research

Incorporating Embodied Knowledge Into Ethical Decision-Making

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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.

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Notes

  1. Australia established the Prohibition of Human Cloning and the Regulation of Human Embryo Research Amendment Act 2006, which opened the way for Australian scientists to legally utilise women’s oöcytes for SCNT. In the same year in the United Kingdom, the Human Fertlisation and Embryology Authority (HFEA) enabled egg-sharing arrangements to be extended for research oöcyte donors.

  2. One American study estimated the labour invested in donating eggs is around 56 h (Widdows 2009).

  3. The researchers did not access the database. Instead two senior and experienced clinicians accessed the patient database and provided the contact address details of potential participants. This yielded 585 potential participants.

  4. Participant names were first screened by the fertility clinic’s senior nurse and counsellor to ensure that participants were not in need of an English translation service (26), living in a country location (42) that made it difficult to attend a face-to-face interview, or subject to a highly traumatic IVF experience (2). Participant response rate was 7 percent.

  5. Participants were recruited from a clinic that does not undertake oöcyte harvesting for research purposes. Participants in both cohorts were asked to respond to hypothetical scenarios rather than report directly on experiences of research oöcyte donation.

  6. Recruitment did not involve an individual approach by the researcher to potential participants. Only upon the expression of written interest did the researcher contact participants (during normal work hours).

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Acknowledgements

This research was funded by an Australian Research Council Linkage Grant (LP0882054). The authors would like to thank the participants for their involvement in the study and anonymous reviewers for their insightful feedback.

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Authors and Affiliations

  1. Centre for Health Communication, University of Technology, Sydney, Sydney, Australia

    Katherine Carroll

  2. Department of Sociology and Social Policy, The University of Sydney, Sydney, Australia

    Catherine Waldby

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  1. Katherine Carroll
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  2. Catherine Waldby
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Correspondence to Katherine Carroll.

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Carroll, K., Waldby, C. Informed Consent and Fresh Egg Donation for Stem Cell Research. Bioethical Inquiry 9, 29–39 (2012). https://doi.org/10.1007/s11673-011-9349-4

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