Contested tissues: the donation of oocytes and embryos in the IVF-stem cell interface in China

The continued significance of human embryonic stem cell research and recent advances in human somatic cell nuclear transfer and human gamete and embryo gene editing have given rise to renewed debates on the donation and use of human embryos and oocytes for research, therapies, and commercial applications. Sociological studies of cell and tissue donation have also indicated that the ethical procedures and social and moral values that surround the donation and use of human reproductive tissues for research do often differ across countries. This chapter addresses the donation of human embryos for human embryonic stem cell research in China. The chapter is based on interviews with 15 IVF clinicians, 15 stem cell researchers, and 15 IVF patients who were asked to donate their embryos for hESC research. Part I focuses on the role and enactment of informed consent procedures. A question that I ask in this respect is what ideas are communicated to potential embryo donors, so that the donation of their spare embryos for hESC research appears reasonable and justifiable? Based on interview data I will illustrate a variety of rhetorical practices and strategies that underpin informed consent procedures. These range from the responsible facilitation of informed choice that emphasizes patient autonomy and the right to refuse donation to more problematic rhetorical practices that involve the provision of false facts and patient deception. Part II discusses these findings in light of the regulatory context in which human embryonic stem cells are produced, banked, and distributed in China. To illustrate the specific effects of this regulatory system, I will draw on a comparison with the regulatory situation in the UK. The chapter concludes that there is often a significant gap between the ways in which the value and use of donated embryos is described to patients and the actual forms of value that these tissues gain in the context of research, distribution, and commercial use. With the renewed importance of human gametes and embryos for human genome editing, these findings indicate that there is the need for more, critical in-depth research into actual donation practices of gametes and embryos and into the needs and perceptions of human tissue donors