In October 2015 the UK enacted legislation to permit the clinical use of two cutting edge germlin... more In October 2015 the UK enacted legislation to permit the clinical use of two cutting edge germline-altering, IVF-based embryonic techniques: pronuclear transfer and maternal spindle transfer (PNT and MST). The aim is to use these techniques to prevent the maternal transmission of serious mitochondrial diseases. Major claims have been made about the quality of the debates that preceded this legislation and the significance of those debates for UK decision-making on other biotechnologies, as well as for other countries considering similar legislation. In this article we conduct a systematic analysis of those UK debates and suggest that claims about their quality are overstated. We identify, and analyse in detail, ten areas where greater clarity, depth and nuance would have produced sharper understandings of the contributions, limitations and wider social impacts of these mitochondrial interventions. We explore the implications of these additional considerations for (i) the protection of all parties involved, should the techniques transfer to clinical applications; (ii) the legitimacy of focussing on short-term gains for individuals over public health considerations, and (iii) the maintenance and improvement of public trust in medical biotechnologies. We conclude that a more measured evaluation of the content and quality of the UK debates is important and timely: such a critique provides a clearer understanding of the possible, but specific, contributions of these interventions, both in the UK and elsewhere; also, these additional insights can now inform the emerging processes of implementation, regulation and practice of mitochondrial interventions.
This article examines the question of how children are located in, and attached to, families. The... more This article examines the question of how children are located in, and attached to, families. The focus is on children whose placement in families is problematic for some reason, such as in adoption, egg and semen donation, embryo donation, surrogacy, paternity testing, babies swapped at birth and foundlings. How a child
Haimes E, Porz RC, Scully JL, Rehmann-Sutter C. "So, what is an embryo? " A comparative... more Haimes E, Porz RC, Scully JL, Rehmann-Sutter C. "So, what is an embryo? " A comparative study of the views of those asked to donate embryos for hESC research in the UK and Switzerland. New Genetics
Introduction In 2006, the International Society for StemCell Research (ISSCR) publishedGuidelines... more Introduction In 2006, the International Society for StemCell Research (ISSCR) publishedGuidelines for the Conduct of Human Embryonic Stem Cell Research. The task force grappled with the issue of financial consideration for eggs (oocytes) used in such research, finally recommending that local stem cell research and ethics review committees, where allowed by law, might determine the nature of compensation, ensuring that it does not constitute an undue inducement (Daley et al., 2007). At the 2009 ISSCR Annual Meeting in Barcelona, the Ethics and Public Policy Committee of the ISSCR hosted a debate on the ethics of payments (in cash or kind) to egg providers. This Position Paper is the culmination of the Committee’s discussions over the subsequent 36 months. In this document, the Committee formulates a view on the ethical acceptability, under certain specified and regulated conditions, of payments (in cash or in kind) to women providing eggs for stem cell research. The Committee’s view ...
This paper is based on linked qualitative studies of the donation of human embryos to stem cell r... more This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carriedout in theUnited Kingdom, Switzerland, and China. All three studies used semi-structured inter- view protocols to allow an in-depth examination of donors' and non-donors' rationales for their donation decisions, with the aim of gaining information on con- textual and other factors that play a role in donor deci- sions and identifying how these relate to factors that are moreusuallyincludedinevaluationsmadebytheoretical ethics. Our findings have implications for one factor that has previously been suggested as being of ethical con- cern: the role of gratitude. Our empirical work shows no evidence that interpersonal gratitude is an important factor, but it does support the existence of a solidarity- based desire to "give something back" to medical research. Thus, we use empirical data to expand and refine the conceptual basis of bioethically theorizing the ...
In October 2015 the UK enacted legislation to permit the clinical use of two cutting edge germlin... more In October 2015 the UK enacted legislation to permit the clinical use of two cutting edge germline-altering, IVF-based embryonic techniques: pronuclear transfer and maternal spindle transfer (PNT and MST). The aim is to use these techniques to prevent the maternal transmission of serious mitochondrial diseases. Major claims have been made about the quality of the debates that preceded this legislation and the significance of those debates for UK decision-making on other biotechnologies, as well as for other countries considering similar legislation. In this article we conduct a systematic analysis of those UK debates and suggest that claims about their quality are overstated. We identify, and analyse in detail, ten areas where greater clarity, depth and nuance would have produced sharper understandings of the contributions, limitations and wider social impacts of these mitochondrial interventions. We explore the implications of these additional considerations for (i) the protection of all parties involved, should the techniques transfer to clinical applications; (ii) the legitimacy of focussing on short-term gains for individuals over public health considerations, and (iii) the maintenance and improvement of public trust in medical biotechnologies. We conclude that a more measured evaluation of the content and quality of the UK debates is important and timely: such a critique provides a clearer understanding of the possible, but specific, contributions of these interventions, both in the UK and elsewhere; also, these additional insights can now inform the emerging processes of implementation, regulation and practice of mitochondrial interventions.
This article examines the question of how children are located in, and attached to, families. The... more This article examines the question of how children are located in, and attached to, families. The focus is on children whose placement in families is problematic for some reason, such as in adoption, egg and semen donation, embryo donation, surrogacy, paternity testing, babies swapped at birth and foundlings. How a child
Haimes E, Porz RC, Scully JL, Rehmann-Sutter C. "So, what is an embryo? " A comparative... more Haimes E, Porz RC, Scully JL, Rehmann-Sutter C. "So, what is an embryo? " A comparative study of the views of those asked to donate embryos for hESC research in the UK and Switzerland. New Genetics
Introduction In 2006, the International Society for StemCell Research (ISSCR) publishedGuidelines... more Introduction In 2006, the International Society for StemCell Research (ISSCR) publishedGuidelines for the Conduct of Human Embryonic Stem Cell Research. The task force grappled with the issue of financial consideration for eggs (oocytes) used in such research, finally recommending that local stem cell research and ethics review committees, where allowed by law, might determine the nature of compensation, ensuring that it does not constitute an undue inducement (Daley et al., 2007). At the 2009 ISSCR Annual Meeting in Barcelona, the Ethics and Public Policy Committee of the ISSCR hosted a debate on the ethics of payments (in cash or kind) to egg providers. This Position Paper is the culmination of the Committee’s discussions over the subsequent 36 months. In this document, the Committee formulates a view on the ethical acceptability, under certain specified and regulated conditions, of payments (in cash or in kind) to women providing eggs for stem cell research. The Committee’s view ...
This paper is based on linked qualitative studies of the donation of human embryos to stem cell r... more This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carriedout in theUnited Kingdom, Switzerland, and China. All three studies used semi-structured inter- view protocols to allow an in-depth examination of donors' and non-donors' rationales for their donation decisions, with the aim of gaining information on con- textual and other factors that play a role in donor deci- sions and identifying how these relate to factors that are moreusuallyincludedinevaluationsmadebytheoretical ethics. Our findings have implications for one factor that has previously been suggested as being of ethical con- cern: the role of gratitude. Our empirical work shows no evidence that interpersonal gratitude is an important factor, but it does support the existence of a solidarity- based desire to "give something back" to medical research. Thus, we use empirical data to expand and refine the conceptual basis of bioethically theorizing the ...
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