Factors associated with the donation and non-donation of embryos for research: a systematic review

Background: Systematic knowledge on the factors that influence the decisions of IVF users regarding embryo donation for research is a core need for patient-centred policies and ethics in clinical practice. However, no systematic review has been provided on the motivations of patients who must decide embryo disposition. This paper fills this gap, presenting a systematic review of quantitative and qualitative studies, which synthesizes the current body of knowledge on the factors and reasons associated with IVF patients’ decisions to donate or not to donate embryos for research. Methods: A systematic search of studies indexed in PubMed, ISIWoK and PsycINFO, published before November 2013, was conducted. Only empirical, peer-reviewed, full-length, original studies reporting data on factors and reasons associated with the decision concerning donation or non-donation of embryos for research were included. Eligibility and data extraction were performed by two independent researchers and disagreements were resolved by discussion or a third reviewer, if required. The main quantitative findings were extracted and synthesized and qualitative data were assessed by thematic content analysis. Results: A total of 39 studies met the inclusion criteria and were included in the review. More than half of the studies (n ¼ 21) used a quantitative methodology, and the remaining were qualitative (n ¼ 15) or mixed-methods (n ¼ 3) studies. The studies were derived mainly from European countries (n ¼ 18) and the USA(n ¼ 11). The proportion of IVF users who donated embryos for research varied from 7% in a study in France to 73% in a Swiss study. Those who donate embryos for research reported feelings of reciprocity towards science and medicine, positive views of research and high levels of trust in the medical system. They described their decision as better than the destruction of embryos and as an opportunity to help others or to improve health and IVF treatments. The perception of risks, the lack of information concerning research projects and the medical system and the conceptualization of embryos in terms of personhood were the most relevant motives for not donating embryos for research. Results relating to the influence of sociodemographic characteristics and reproductive and gynaecological history were mostly inconclusive. Conclusions: Three iterative and dynamic dimensions of the IVF patients’ decision to donate or not to donate embryos for research emerged from this review: the hierarquization of the possible options regarding embryo disposition, according to the moral, social and instrumental status attributed to embryos; patients’ understanding of expectations and risks of the research on human embryos; and patients’ experiences of information exchange and levels of trust in the medical-scientific institutions.This study was partly co-financed through FEDER funding from the Operational Programme Factors of Competitiveness, COMPETE, and through national funding from the FCT, Foundation for Science and Technology (Portuguese Ministry of Education and Science) within the project ‘Health, governance and accountability in embryo research: couples’ decisions about the fates of embryos’ (FCOMP-01-0124- FEDER-014453) and the PhD fellowship SFRH/BD/75807/2011 (to C.S.)

Patterns of Passage into protected areas: drivers and outcomes of Fulani immigration, settlement and integration into the Kachia Grazing Reserve, Northwest Nigeria

Abstract Increasing land use and associated competition for natural resources in the wake of high human and livestock population pressures have been major challenges confronting pastoralists of West Africa. This is especially true in Nigeria where Fulani make up 4% of the national population and prevailing national insecurity issues are impacting on pastoral livelihoods, including violent conflicts over land and ethnic, religious and political disparities. This study examined the dynamics of immigration within the Kachia Grazing Reserve (KGR), an exclusively Fulani pastoralist community in Kaduna State, northwest Nigeria, prompted by concerns from both the farming communities and the authorities about mounting pressure on existing limited resources, particularly in regard to availability of cattle grazing resources. Drawing from a household census conducted in 2011 and employing a range of qualitative methods (focus group discussions and key informant interviews), this study explored the drivers and consequences of immigration and subsequent integration within the KGR community. The study revealed two types of immigration: a steady trickle of pastoralists migrating to the reserve to settle and acquire land, secure from the stresses of competition from cultivators, and the sudden influx of internally displaced persons fleeing violent clashes in their areas of origin. Population pressure within the reserve has risen steadily over the past three decades, such that it is severely overgrazed (as evidenced by reports from the KGR community that the animals run short of pasture even during the wet season due to desertification and the spread of non-edible weeds). The newer immigrants, fleeing conflict, tended to arrive in the reserve with significantly larger herds than those kept by established residents. Pastoralists in the reserve have been forced back into the practice of seasonal transhumance in both wet and dry seasons to support their herds, with all the attendant risks of theft, clashes with cultivators and increased disease transmission

Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy. European Society of Human Genetics and European Society of Human Reproduction and Embryology.

In March 2005, a group of experts from the European Society of Human Genetics and European Society of Human Reproduction and Embryology met to discuss the interface between genetics and assisted reproductive technology (ART), and published an extended background paper, recommendations and two Editorials. Seven years later, in March 2012, a follow-up interdisciplinary workshop was held, involving representatives of both professional societies, including experts from the European Union Eurogentest2 Coordination Action Project. The main goal of this meeting was to discuss developments at the interface between clinical genetics and ARTs. As more genetic causes of reproductive failure are now recognised and an increasing number of patients undergo testing of their genome before conception, either in regular health care or in the context of direct-to-consumer testing, the need for genetic counselling and preimplantation genetic diagnosis (PGD) may increase. Preimplantation genetic screening (PGS) thus far does not have evidence from randomised clinical trials to substantiate that the technique is both effective and efficient. Whole-genome sequencing may create greater challenges both in the technological and interpretational domains, and requires further reflection about the ethics of genetic testing in ART and PGD/PGS. Diagnostic laboratories should be reporting their results according to internationally accepted accreditation standards (International Standards Organisation - ISO 15189). Further studies are needed in order to address issues related to the impact of ART on epigenetic reprogramming of the early embryo. The legal landscape regarding assisted reproduction is evolving but still remains very heterogeneous and often contradictory. The lack of legal harmonisation and uneven access to infertility treatment and PGD/PGS fosters considerable cross-border reproductive care in Europe and beyond. The aim of this paper is to complement previous publications and provide an update of selected topics that have evolved since 2005

Regulating disasters? The role of international law in disaster prevention and management

Purpose – This article explores the role of international law in disaster prevention and management, with a particular focus on the emerging field of international disaster law, and its relationship with international human rights law. It further introduces the four articles of the special column of this journal issue, dedicated to disasters and international law. Design/methodology/approach – The analysis is based upon primary sources of legislation and policy, as well as academic literature on disasters and international law. Findings – Although the field of international disaster law is at its infancy, we argue that this emergent area does have the potential to gain widespread recognition as a distinct field of law, and that this could be of benefit for the wider disaster management community. Originality/value – The article introduces key legal features and themes relating to international law and disasters, highlighting their relevance for disaster management. The added value is to widen the discussion on aspects of disasters regulated by international law, thus facilitating the future exchange with other academic subjects and operational fields. Keywords – disasters; international law; disaster management; treaties; human rights; international disaster law; international human rights law. Paper type – Research pape