Eric Blyth

Involving children in health and social research: ?Human becomings? or ?active beings??

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.

Reproductive tourism - a price worth paying for reproductive autonomy?

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.

Cross-border reproductive care: A review of the literature.

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.

Crossing borders for fertility treatment: motivations, destinations and outcomes of UK fertility travellers

BACKGROUND There are few systematic studies of the incidence of cross-border fertility care and even fewer reports of qualitative research with those undertaking treatment outside their country of origin. This paper reports findings from a qualitative study of UK residents with experience of cross-border care: the socio-demographic characteristics of UK travellers; their reasons for seeking treatment abroad; the treatments they sought; the destinations they chose and the outcomes of their treatment. METHODS Data regarding cross-border fertility treatment were collected from a purposive sample of 51 people by means of in-depth, semi-structured interviews between May 2009 and June 2010. Data were analysed using a systematic thematic coding method and also subjected to quantitative translation. RESULTS Patient motivations for travelling abroad are complex. A desire for timely and affordable treatment with donor gametes was evident in a high number of cases (71%). However, most people gave several reasons, including: the cost of UK treatment; higher success rates abroad; treatment in a less stressful environment and dissatisfaction with UK treatment. People travelled to 13 different countries, the most popular being Spain and the Czech Republic. Most organized their own treatment and travel. The mean age of women seeking treatment was 38.8 years (range 29-46 years) and the multiple pregnancy rate was 19%. CONCLUSIONS 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.

“i wanted to be interesting. i wanted to be able to say ‘i've done something interesting with my life’”: Interviews with surrogate mothers in britain

Abstract Surrogacy arrangements have generated considerable debate in Britain and elsewhere, although such debate has taken place in an empirical vacuum. Nevertheless, despite the explicit intention of government policy that there should be no provision for licensing of non-commercial surrogacy services, surrogacy arrangements are being inexorably drawn into the regulatory framework established under the provisions of the Human Fertilisation and Embryology Act 1990 (Blyth, 1993). Following implementation of the Act an exploratory empirical study (the first of its kind to be conducted in Britain) was carried out to investigate the experiences of British surrogate mothers and commissioning parents. This paper reports on the findings concerning the experiences of the surrogate mothers involved in the study. The experiences of commissioning parents will be reported separately.

Globalization and cross-border reproductive services: Ethical implications of surrogacy in India for social work

Surrogacy in the context of cross-border care has hitherto received little attention from the international social work community. In India, the provision of surrogacy services for foreign couples may be seen as part of the country’s wider health tourism industry. This article overviews current evidence on surrogacy in India, and discusses the extent to which proposed legislation, the Assisted Reproductive Technologies (Regulation) Bill and Rules 2009, satisfactorily addresses social workers’ concerns to ensure adequate protection of the interests of young Indian women engaged in surrogacy, as outlined in the International Federation of Social Workers’ policy on cross-border reproductive care.

Exclusion from School and Victim-blaming

Abstract Over recent years evidence of increasing levels of exclusion from British schools has been provided by individual researchers, teaching associations, local education authorities, the media and the government. Current dominant perceptions tend to focus on the pathological behaviour of individual children (children who ‘behave badly’ in the Governments terms) or the inability of schools to manage such challenging behaviour. Less readily acknowledged are the inherent tensions resulting from processes that permit certain children to be denied access to the compulsory education system and the interaction between exclusion from school and race, gender and class stratification. Exclusion must, therefore, be seen not only in terms of young peoples experiences of education and schooling but also as part of the complex relationship between individuals, families, the labour market, health and state support and surveillance services. The paper aims to contribute to increasing awareness of the disadvantage ...

Measuring the quality of peer-reviewed publications in social work: Impact factors - liberation or liability?

Systems for measuring the quality of publications in peer-reviewed academic journals have achieved importance in the ‘audit culture’ to which academia worldwide has become increasingly subjected. In the United Kingdom this debate has focused on government proposals to give greater emphasis to bibliometrics (counts of journal articles and their citations) as a measurement of research quality, in respect of publications in the emergent Research Excellence Framework (REF) which is set to replace the Research Assessment Exercise (RAE). This approach impacts on social work educators who are the main producers of papers published in peer-reviewed academic journals. It affects their publishing behaviour by pressurising them to publish their work in journals that are regarded as being prestigious, for which ‘high impact factor’ journals as determined by Thomson Reuters—a private commercial information management enterprise with headquarters in the United States—has become a proxy for quality. In this paper the authors describe and critique the Thomson Reuters system as it applies to social work and propose an alternate fair, inclusive and transparent system for assessing the quality of publications based on peer evaluation and incorporating an ethical approach consistent with the disciplines professional values.

Information on genetic origins in donor-assisted conception: Is knowing who you are a human rights issue?

It was not by my choice that my ancestral home is nothing more than a sample jar (Whipp, 2000) There can be few more basic rights than a right to ones identity…a right not to be deceived about ones true origins (Freeman, 1996) This article provides an overview of existing arrangements for the management of information on genetic origins in donor-assisted conception, that is, treatment involving sperm, eggs or embryo donation. The balance of this article reflects the fact that much of the debate on information on genetic origins in donor-assisted conception has been dominated by sperm donation. A detailed discussion of the rather different issues of egg and embryo donation would have added significantly to its complexity and length. The article considers what donor-conceived people wish to know about their genetic origins and how this might be seen as a human rights issue. The possibility of conflict between the interests and rights of donors and recipients of donated gametes or embryos is discussed, and possible policy and legislative options are outlined. The paper concludes that a donor-conceived persons own definition of their best interests should form the basis for the facilitation of access to information about their genetic origins.

The changing profile of surrogacy in the UK – Implications for national and international policy and practice

Since 2007, the numbers of UK Parental Orders granted following surrogacy have markedly increased. More recently, eligibility criteria have been extended to unmarried heterosexual couples and same-sex couples rather than only married couples. Numbers seeking fertility treatments, including through surrogates, outside their country of residence have also increased. This paper presents the limited data currently available – from UK General Register Offices, Child and Family Court Advisory and Support Service for England and the UK surrogacy agencies: COTS, Surrogacy UK, British Surrogacy Centre – to consider potential reasons for the increase and to consider policy and practice implications. It charts the apparent decline in involvement of surrogacy agencies and suggests the potential for exploitation where scrutiny of arrangements and follow up are limited. It recommends improvements to data collection and argues the need for a more integrated approach to review of surrogacy arrangements both nationally and internationally.