This article draws on the authors’ experiences of undertaking health and social research involving children in Australia and England and focuses on securing the informed consent of children to participate in such research. A clear trend within literature, service provision, legislation and international conventions recognizes children as ‘active beings’ in all aspects of their lives. The services that are the focus of the research and evaluation projects in which the authors have been involved sought to empower children as active agents and decision-makers. Crucially, not only were these services available directly to children without requiring parental permission, but many children were also accessing these services without their parents’ knowledge. However, when it came to researching and evaluating users’ experiences of these services, the authors faced the problem that existing research gatekeeping systems tended to construct children as dependent, in need of protection and as ‘human becomings’. The authors found that research ethics committees would permit the research to take place only if both the child’s informed consent and that of his or her parents was obtained. The authors outline the implications of such dilemmas, which may not only be counter productive in terms of research objectives but also risk failing to afford children rightful regard in contemporary society. While the authors conclude that there are no quick fixes to the resolution of such dilemmas, they believe that researchers need to engage with the gatekeepers of research to ensure that the laudable effort to protect potentially vulnerable participants avoids overprotection, paternalism and the further disenfranchisement of already marginalized young people.
UK residents have diverse reasons for, and approaches to, seeking overseas treatment and do not conform to media stereotypes. Further research is needed to explore implications of cross-border treatment for donors, offspring and healthcare systems.
Cross-border reproductive care (CBRC) has attracted considerable attention in media and professional publications. The aim of this review is to present a critical narrative overview of the published evidence on CBRC. A systematic search of key academic databases was undertaken with no time restrictions set for publication. This was supplemented by additional searches of key websites, reference chaining and enquiries to people working in the field. A total of 54 items are included in the review, including both empirical research studies (18) and debate papers (36). The key themes discussed are: terminology and definitions; incidence; experiences; explanations; implications; and policy responses. Significant methodological limitations and gaps in the literature are identified. Evidence on incidence is scant, though it suggests that CBRC is increasing. The literature suggests legal, social and political drivers, which vary in importance geographically and between individuals. Limited findings on patient perceptions suggest a broadly positive patient experience. Suggested policy responses include prohibition, regulatory harmonization and harm minimization. There is a need for better international data collection tools and both quantitative and qualitative work which encompasses views of patients, donors, surrogates and professionals and which explores the implications for healthcare services in sending countries.
Debates concerning the degree to which reproductive technology (and, within this, assisted conception) should be subjected to control generally focus on the appropriate balance to be struck between the views of the majority in a democratic state, the need to ensure adequate protection of those directly involved, the need to ensure public acceptance of specific procedures and research and the freedom of individuals to organize their life as they see fit. While different countries espouse similar commitments to basic human values concerning the protection of life, human dignity, autonomy, and prevention of discrimination, these have not provided a means by which consensus regarding assisted conception has been achieved. Such differences facilitate ‘reproductive tourism’. This paper discusses the relationship between ‘reproductive tourism’, ‘reproductive autonomy’ and efforts to regulate assisted conception. It concludes that reproductive tourism will continue to thrive but that discussion must take place nationally and internationally to promote assisted conception procedures that avoid foreseeable harm.
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