Chantal Bouffard

Genetic diagnosis of embryos: Clear explanation, not rhetoric, is needed

Embryonic research and genetic testing continue to raise concerns. [1][1] With controversy comes debate and, sometimes, distortion of facts through the use of loaded terms and concepts that call to mind both historical events and science fiction. Achieving greater public understanding of genetic

Neurofibromatosis Type 1 and the “Elephant Man's” Disease: The Confusion Persists: An Ethnographic Study

Background During informal interviews in the course of an ethnographic study on intergenerational dialogue between individuals with neurofibromatosis and their parents, many members of Canadian neurofibromatosis associations stated they continue to be told the condition that afflicts them or their children is the “elephant mans” disease. Today, even though well established clinical criteria make it possible to diagnose and differentiate the two diseases, the confusion between NF1 and the disease of Joseph Merrick, the “elephant man”, persists in both media representations and those of physicians. The objective of this article is to document the persistence of this confusion, to identify the factors that contribute to it, and to identify its impact on the well being of individuals with NF1. Methodology Preliminary stages of an ethnographic study. Principal Findings Our findings show that some reference sources, past medical training, and print and online news media have all contributed to the persistence of the association between NF1 and the disease of Joseph Merrick, the “elephant man”. Our observations suggest that this misconception can have negative medical, social, and psychological impacts on patients and their families and thus increase the burden of the disease. Conclusions Changes of attitude regarding medical teaching and the media could lead to definitively clearing up the confusion.

Information and decision‐making process for selective termination of dichorionic pregnancies: some French obstetricians' points of view

In France, neither Bioethics Law nor law related to abortion make reference to selective terminations (ST). Because they apply in the context of multiple pregnancies, ST raises problems which differ from those we usually see in prenatal medicine.

Differences between selective termination of pregnancy and fetal reduction in multiple pregnancy: a narrative review

Although selective termination of pregnancy and fetal reduction in multiple pregnancy both involve the termination in utero of the development of live fetuses, these two procedures are different in several aspects. Nevertheless, several authors tend to amalgamate and confuse their psychosocial consequences and the ethical issues they raise. Therefore, this narrative review, derived from a comparative analysis of 91 articles, shines a light on these amalgamations and confusions, as well as on the medical, contextual, experiential and ethical differences specific to selective termination and fetal reduction.

Neurofibromatosis Type 1: Persisting Misidentification of the “Elephant Man” Disease

Background: During informal interviews in the course of an ethnographic study on intergenerational dialogue between individuals with neurofibromatosis and their parents, many members of Canadian neurofibromatosis associations have stated that they continue to be told the condition that afflicts them or their children is “elephant mans disease.” Today, even though well-established clinical criteria make it possible to diagnose and differentiate the 2 diseases, the confusion between neurofibromatosis type 1 (NF1) and elephant mans disease persists in both the medias and physicians’ representations. Methods: This was an ethnographic study in medical anthropology. Discussion: Some reference sources and print and online news media have all contributed to the persistence of the association between NF1 and elephant mans disease. Our observations suggest that confusing NF1 with the Elephant Mans condition harms the interests of those with NF1 and thus increases the burden of the disease. Conclusion: Changes of attitude regarding medical teaching and the media could dispel the confusion among physicians and journalists.

Cross-border reprogenetic services.

The purpose of this review is to synthesize the current knowledge on the international movement of patients and biopsied embryo cells for pre‐implantation genetic diagnosis and its different applications. Thus far, few attempts have been made to identify the specific nature of this phenomenon called ‘cross‐border reprogenetic services’. There is scattered evidence, both empirical and speculative, suggesting that these services raise major issues in terms of service provision, risks for patients and the children‐to‐come, the legal liabilities of physicians, as well as social justice. To compile this evidence, this review uses the narrative overview protocol combined with thematic analysis. Five major themes have emerged from the literature at the conjunction of cross‐border treatments and reprogenetics: ‘scope’, ‘scale’, ‘motivations’, ‘concerns’, and ‘governance’. Similar themes have already been observed in the case of other medical tourism activities, but this review highlights their singularity with reprogenetic services. It emphasizes the diagnostic and autologous feature of reprogenetics, the constant risk of misdiagnosis, the restriction on certain tests for medically controversial conditions, and the uncertain accessibility of genetic counseling in cross‐border settings.

Gender Eugenics Between Medicine, Culture, and Society

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State Intervention in Couples' Reproductive Decisions: Socioethical Reflections Based on the Practice of Preimplantation Genetic Diagnosis in France

Adopting socioethical and anthropological perspectives, this article addresses the impact of state intervention in the reproductive life of couples who consult for preimplantation genetic diagnosis (PGD) in France. Our main objective is to identify and analyze the socioethical problems flowing from French legislation as related to PGD and from its implementation. Methods included review and analysis of the relevant literature, ethnographic research in the three centers accredited to perform PGD, and participant observation (990 hours), with 79 semistructured interviews. Ethical problems identified were: (1) discrimination based on sexual orientation and the requirement for adherence to a traditional model of the couple and the family; (2) inequities in access to PGD; (3) restrictions on couples’ autonomy; and (4) breaches of respect for private life. We conclude that the state could improve the ethical conditions in which PGD is practiced by: (1) establishing educational programs in ethics to support members of multidisciplinary centers for prenatal diagnosis; (2) conducting empirical studies on the social acceptability of PGD; and (3) conducting empirical studies on the extent of state intervention in the reproductive life of couples likely to have recourse to reprogenetic services.

Cross-border preimplantation genetic diagnosis

Bayefskys article (2016) reflects upon the different approaches to the regulation of cross-border reprogenetic services (CBRS) and preimplantation genetic diagnosis (PGD) as instituted by more-regulated European countries compared to the laissez-faire approach adopted by the USA. Discussing how the current legal vacuum in the USA attracts couples from countries with more restrictive regulations, Bayefsky thereby makes the issue of reprogenetics policies and CBRS particularly relevant. Taking into consideration our own article on CBRS (Couture et al. 2015) and also ethnographic fieldwork we have conducted in Canadian fertility clinics, we would like to add four additional arguments to Bayefskys analyses: (i) ‘Law evasion’ appears not to be the only motivation for CBRS in American PGD laboratories – we also noted cooperation between centres in analyzing specific or rare diseases as another motivation. (ii) Not only do couples cross borders, but, in most cases, clinics from around the world send biopsied samples to the USA for analyses through ‘transport PGD’. This offers patients from regions where PGD testing is not available the opportunity to access highquality testing. (iii) Bayefsky suggests that the detrimental effect of CBRS is the amplification of the usual risks of PGD. There is also the risk that CBRS may result in suboptimal genetic counselling. Genetic counselling is necessary to help patients understand the implications of genetic testing in the preimplantation period and to assist in their decision-making process. In the context of CBRS, cultural, scientific and linguistic barriers could weaken a couples informed consent. Furthermore, the success rate of clinics

Reproductive outsourcing: an empirical ethics account of cross-border reproductive care in Canada

Cross-border reproductive care (CBRC) can be defined as the movement from one jurisdiction to another for medically assisted reproduction (MAR). CBRC raises many ethical concerns that have been addressed extensively. However, the conclusions are still based on scarce evidence even considering the global scale of CBRC. Empirical ethics appears as a way to foster this ethical reflection on CBRC while attuning it with the experiences of its main actors. To better understand the ‘in and out’ situation of CBRC in Canada, we conducted an ethnographic study taking a ‘critically applied ethics’ approach. This article presents a part of the findings of this research, obtained by data triangulation from qualitative analysis of pertinent literature, participant observation in two Canadian fertility clinics and 40 semidirected interviews. Based on participants’ perceptions, four themes emerged: (1) inconsistencies of the Canadian legal framework; (2) autonomy and the necessity to resort to CBRC; (3) safety and the management of CBRC individual risks; and (4) justice and solidarity. The interaction between these four themes highlights the problematic of ‘reproductive outsourcing’ that characterised the Canadian situation, a system where the controversial aspects of MAR are knowingly pushed outside the borders.