Journal of Reproductive and Infant Psychology, May 13, 2016
Objective. This study aimed to gain an in-depth understanding of the experiences of genetic ties ... more Objective. This study aimed to gain an in-depth understanding of the experiences of genetic ties in intra-family oocyte donation families. Background. Previous research has shown that most mothers have a good and stable relationship with their donor. Little is known about the meaning of the difference in genetic ties for parents who conceived through sister-to-sister oocyte donation. Methods. An Interpretative Phenomenological Analysis was performed and focused on both individual experiences and couple experiences with regard to genetic ties. Ten participants were recruited via an infertility clinic and took part in semi-structured couple interviews. Results. Our analysis revealed that the donation was seen as a way to equal genetic parenthood. Participants struggled with this prevailing ideal of genetic parenthood and questioned the legitimacy of their motherhood. Several dynamics were identified when couples tried to deal with the imbalance in genetic ties: they acknowledged each other, convinced one another or pushed away the difference in genetic ties. Couples also managed the presence of a genetic tie with the donor by negotiating the closeness in their family relationships. Conclusion. The lack of a full genetic tie remained a meaningful absence for some mothers and the way couples dealt with this varied. We plead that the option of post-donation care should be offered to support couples with the complexities they try to deal with.
in the field. Their role was to review the science, and to determine if it was safe to begin trea... more in the field. Their role was to review the science, and to determine if it was safe to begin treating patients with new techniques. The Panel concluded there was no evidence to suggest the techniques are unsafe. As the science is so new, the Panel recommended undertaking further research in human eggs and embryos, which is currently underway. Study design, size, duration: At the request of UK government the Human Fertilisation and Embryology Authority (HFEA) sought public views on the possible clinical use of techniques designed to prevent mitochondrial disease, through an open and independent public dialogue and consultation during 2012. Participants/materials, setting, methods: The following methods were used to gather and understand public opinion: public dialogue exercises, a representative survey, a patient focus group, public meetings and a consultation questionnaire. These techniques involve some medical firsts and therefore raise new ethical and social issues, which need to be carefully considered. Main results and the role of chance: A total of approximately 3000 people took part across the different methods for gathering public views. Analysis of their responses demonstrate that the majority of people support a change in law to allow the clinical use of these techniques. We will also show how attitudes vary according to exposure to information and how they change over time. Limitations, reason for caution: Many participants with higher levels of knowledge and awareness of the techniques have well considered and firmly held views about the issues. People coming new to the topic tend to be open in their views, at least initially. Wider implications of the findings: The UK government will use these findings to decide whether or not to propose a change in the law to permit the clinical use of these techniques. If approved it will mean that women with mitochondrial disorders will be able to have genetically related children who are free from disease. Study funding/competing interest(s): This public dialogue and consultation exercise was funded by UK government. The HFEAworked together with Sciencewise and research partners. Trial registration number: N/A
Background: Although children from lesbian families appear to make a distinction between a reside... more Background: Although children from lesbian families appear to make a distinction between a residential father and a donor, defining these two concepts seems to be a challenge. They need to appeal to more familiar concepts such as the hetero-normative concept of 'mother' to give a definition of the unfamiliar concepts they are confronted with. Methods: The study is based on qualitative in-depth interviews with 6 children (9-10 years old) from lesbian families, all of which have been conceived using anonymous sperm donation. Semi-structured interviews were conducted. Results: Two findings stand out. First, in defining the concepts of biological and non-biological mother, both mothers were described as equal parents. No difference was attached by the children to the mothers' position as a parent. Second, the concepts 'non-biological mother' and 'donor' were defined by looking at the hetero-normative concepts of 'mummy' and 'daddy'. To define the non-biological mother, both a 'mummy' and a 'daddy' were used as a reference. To define the donor concept, often references were made to a daddy. This comparison with a 'daddy' turned out to be complex due to the conflict between the role as a progenitor and the lack of a social relationship. The lack of language surrounding this concept turned out to be difficult. Wider implications of the findings: This study illustrates the complexity and ambiguity of children's experiences and perceptions when dealing with issues related to genetic and social parenthood.
came into force in the UK. Subject to criminal sanctions, the post mortem removal of human biolog... more came into force in the UK. Subject to criminal sanctions, the post mortem removal of human biological material for research is now only allowed in the UK after so-called 'appropriate consent' is given. If the deceased person had not given explicit consent, that consent must be obtained from a 'nominated representative' or, in the absence of such, from a person who stood in a qualifying relationship with the deceased. 2 In countries operating an explicit consent or so-called 'opt-in' system for post mortem organ donation, similar provisions apply to post mortem removal of body material for research. Likewise, some countries operating a presumed consent or so-called 'opt-out' system for post mortem organ donation for transplantation have recently extended the presumed consent system to post mortem removal of human body material for research. This has happened in Spain, France and Belgium. It has resulted in a twofold extension of the presumed consent regime that governs cadaveric organ transplantation: first, an extension from post mortem removal of organs to post mortem removal of any human body material that falls under the scope of the applicable law on human body material, and secondly, an extension from post mortem removal for transplantation purposes to post mortem removal for research purposes.
Any organ which is allocated to one individual represents a missed opportunity for someone else. ... more Any organ which is allocated to one individual represents a missed opportunity for someone else. Given the important repercussions which organ allocation policies inevitably have for certain people, any prioritization policy should rest on a solid argumentative basis. In this paper, we analyze the widespread practice of prioritizing pediatric patients in the allocation of kidneys. While official policy documents offer no arguments in support of pediatric priority, such arguments can be found in the academic literature on pediatric renal transplantation. Our paper is the first to bring together and critically analyze these. We identify five commonly cited arguments and show that most are problematic. Only the so-called 'growth and development argument' potentially holds the promise of providing a compelling justification for pediatric priority. It claims that expedited transplantation for children substantially improves their quality of life by minimizing growth and developmental delays. In its current form, the 'growth and development argument' is incomplete. Several of its underlying assumptions require empirical backup. As long as such corroborating evidence is not provided, the legitimacy of pediatric priority rules rests on shaky grounds.
For many patients, living donor liver transplantation represents their only hope of receiving a l... more For many patients, living donor liver transplantation represents their only hope of receiving a lifesaving graft. In certain (albeit rare) cases, a minor will be the only suitable donor. Living liver donation by minors has been reported in several countries. In the academic literature and professional guidelines, little attention is paid to the development of an ethical framework for this practice. The focus is frequently limited to the donation of regenerative tissues and kidneys. However, liver donation differs in important respects because of the increased medical risks and the lack of substitute therapies. Therefore, in this article, we assess whether living liver donation by minors is ethically appropriate. We argue that living liver donation by minors is justifiable only if minors possess the capacity to consent to donation or if the procedure is in their best interests. Although minors may possess adult-like levels of cognitive maturity, they lack sufficient psychosocial maturity to give valid consent to donation. In addition, living liver donation is generally not in a minor's best interests. With respect to the latter, the potential psychological benefits that a minor may experience as a result of living liver donation are insufficiently empirically supported and are unlikely to outweigh the short-and long-term medical and psychological risks. Therefore, we conclude that minors should not be considered as potential living liver donors.
Journal of Reproductive and Infant Psychology, May 13, 2016
Objective. This study aimed to gain an in-depth understanding of the experiences of genetic ties ... more Objective. This study aimed to gain an in-depth understanding of the experiences of genetic ties in intra-family oocyte donation families. Background. Previous research has shown that most mothers have a good and stable relationship with their donor. Little is known about the meaning of the difference in genetic ties for parents who conceived through sister-to-sister oocyte donation. Methods. An Interpretative Phenomenological Analysis was performed and focused on both individual experiences and couple experiences with regard to genetic ties. Ten participants were recruited via an infertility clinic and took part in semi-structured couple interviews. Results. Our analysis revealed that the donation was seen as a way to equal genetic parenthood. Participants struggled with this prevailing ideal of genetic parenthood and questioned the legitimacy of their motherhood. Several dynamics were identified when couples tried to deal with the imbalance in genetic ties: they acknowledged each other, convinced one another or pushed away the difference in genetic ties. Couples also managed the presence of a genetic tie with the donor by negotiating the closeness in their family relationships. Conclusion. The lack of a full genetic tie remained a meaningful absence for some mothers and the way couples dealt with this varied. We plead that the option of post-donation care should be offered to support couples with the complexities they try to deal with.
in the field. Their role was to review the science, and to determine if it was safe to begin trea... more in the field. Their role was to review the science, and to determine if it was safe to begin treating patients with new techniques. The Panel concluded there was no evidence to suggest the techniques are unsafe. As the science is so new, the Panel recommended undertaking further research in human eggs and embryos, which is currently underway. Study design, size, duration: At the request of UK government the Human Fertilisation and Embryology Authority (HFEA) sought public views on the possible clinical use of techniques designed to prevent mitochondrial disease, through an open and independent public dialogue and consultation during 2012. Participants/materials, setting, methods: The following methods were used to gather and understand public opinion: public dialogue exercises, a representative survey, a patient focus group, public meetings and a consultation questionnaire. These techniques involve some medical firsts and therefore raise new ethical and social issues, which need to be carefully considered. Main results and the role of chance: A total of approximately 3000 people took part across the different methods for gathering public views. Analysis of their responses demonstrate that the majority of people support a change in law to allow the clinical use of these techniques. We will also show how attitudes vary according to exposure to information and how they change over time. Limitations, reason for caution: Many participants with higher levels of knowledge and awareness of the techniques have well considered and firmly held views about the issues. People coming new to the topic tend to be open in their views, at least initially. Wider implications of the findings: The UK government will use these findings to decide whether or not to propose a change in the law to permit the clinical use of these techniques. If approved it will mean that women with mitochondrial disorders will be able to have genetically related children who are free from disease. Study funding/competing interest(s): This public dialogue and consultation exercise was funded by UK government. The HFEAworked together with Sciencewise and research partners. Trial registration number: N/A
Background: Although children from lesbian families appear to make a distinction between a reside... more Background: Although children from lesbian families appear to make a distinction between a residential father and a donor, defining these two concepts seems to be a challenge. They need to appeal to more familiar concepts such as the hetero-normative concept of 'mother' to give a definition of the unfamiliar concepts they are confronted with. Methods: The study is based on qualitative in-depth interviews with 6 children (9-10 years old) from lesbian families, all of which have been conceived using anonymous sperm donation. Semi-structured interviews were conducted. Results: Two findings stand out. First, in defining the concepts of biological and non-biological mother, both mothers were described as equal parents. No difference was attached by the children to the mothers' position as a parent. Second, the concepts 'non-biological mother' and 'donor' were defined by looking at the hetero-normative concepts of 'mummy' and 'daddy'. To define the non-biological mother, both a 'mummy' and a 'daddy' were used as a reference. To define the donor concept, often references were made to a daddy. This comparison with a 'daddy' turned out to be complex due to the conflict between the role as a progenitor and the lack of a social relationship. The lack of language surrounding this concept turned out to be difficult. Wider implications of the findings: This study illustrates the complexity and ambiguity of children's experiences and perceptions when dealing with issues related to genetic and social parenthood.
came into force in the UK. Subject to criminal sanctions, the post mortem removal of human biolog... more came into force in the UK. Subject to criminal sanctions, the post mortem removal of human biological material for research is now only allowed in the UK after so-called 'appropriate consent' is given. If the deceased person had not given explicit consent, that consent must be obtained from a 'nominated representative' or, in the absence of such, from a person who stood in a qualifying relationship with the deceased. 2 In countries operating an explicit consent or so-called 'opt-in' system for post mortem organ donation, similar provisions apply to post mortem removal of body material for research. Likewise, some countries operating a presumed consent or so-called 'opt-out' system for post mortem organ donation for transplantation have recently extended the presumed consent system to post mortem removal of human body material for research. This has happened in Spain, France and Belgium. It has resulted in a twofold extension of the presumed consent regime that governs cadaveric organ transplantation: first, an extension from post mortem removal of organs to post mortem removal of any human body material that falls under the scope of the applicable law on human body material, and secondly, an extension from post mortem removal for transplantation purposes to post mortem removal for research purposes.
Any organ which is allocated to one individual represents a missed opportunity for someone else. ... more Any organ which is allocated to one individual represents a missed opportunity for someone else. Given the important repercussions which organ allocation policies inevitably have for certain people, any prioritization policy should rest on a solid argumentative basis. In this paper, we analyze the widespread practice of prioritizing pediatric patients in the allocation of kidneys. While official policy documents offer no arguments in support of pediatric priority, such arguments can be found in the academic literature on pediatric renal transplantation. Our paper is the first to bring together and critically analyze these. We identify five commonly cited arguments and show that most are problematic. Only the so-called 'growth and development argument' potentially holds the promise of providing a compelling justification for pediatric priority. It claims that expedited transplantation for children substantially improves their quality of life by minimizing growth and developmental delays. In its current form, the 'growth and development argument' is incomplete. Several of its underlying assumptions require empirical backup. As long as such corroborating evidence is not provided, the legitimacy of pediatric priority rules rests on shaky grounds.
For many patients, living donor liver transplantation represents their only hope of receiving a l... more For many patients, living donor liver transplantation represents their only hope of receiving a lifesaving graft. In certain (albeit rare) cases, a minor will be the only suitable donor. Living liver donation by minors has been reported in several countries. In the academic literature and professional guidelines, little attention is paid to the development of an ethical framework for this practice. The focus is frequently limited to the donation of regenerative tissues and kidneys. However, liver donation differs in important respects because of the increased medical risks and the lack of substitute therapies. Therefore, in this article, we assess whether living liver donation by minors is ethically appropriate. We argue that living liver donation by minors is justifiable only if minors possess the capacity to consent to donation or if the procedure is in their best interests. Although minors may possess adult-like levels of cognitive maturity, they lack sufficient psychosocial maturity to give valid consent to donation. In addition, living liver donation is generally not in a minor's best interests. With respect to the latter, the potential psychological benefits that a minor may experience as a result of living liver donation are insufficiently empirically supported and are unlikely to outweigh the short-and long-term medical and psychological risks. Therefore, we conclude that minors should not be considered as potential living liver donors.
Uploads
Papers by Guido Pennings