Garrath Williams

An empirical survey on biobanking of human genetic material and data in six EU countries.

Biobanks correspond to different situations: research and technological development, medical diagnosis or therapeutic activities. Their status is not clearly defined. We aimed to investigate human biobanking in Europe, particularly in relation to organisational, economic and ethical issues in various national contexts. Data from a survey in six EU countries (France, Germany, the Netherlands, Portugal, Spain and the UK) were collected as part of a European Research Project examining human and non-human biobanking (EUROGENBANK, coordinated by Professor JC Galloux). A total of 147 institutions concerned with biobanking of human samples and data were investigated by questionnaires and interviews. Most institutions surveyed belong to the public or private non-profit-making sectors, which have a key role in biobanking. This activity is increasing in all countries because few samples are discarded and genetic research is proliferating. Collections vary in size, many being small and only a few very large. Their purpose is often research, or research and healthcare, mostly in the context of disease studies. A specific budget is very rarely allocated to biobanking and costs are not often evaluated. Samples are usually provided free of charge and gifts and exchanges are the common rule. Good practice guidelines are generally followed and quality controls are performed but quality procedures are not always clearly explained. Associated data are usually computerised (identified or identifiable samples). Biobankers generally favour centralisation of data rather than of samples. Legal and ethical harmonisation within Europe is considered likely to facilitate international collaboration. We propose a series of recommendations and suggestions arising from the EUROGENBANK project.

The IDEFICS community-oriented intervention programme: a new model for childhood obesity prevention in Europe?

Background and objectives:The European Union—as well as other parts of the world—faces a major challenge of increasing incidence of overweight/obesity. In particular, the increase in childhood obesity gives rise to a strong imperative for immediate action. Yet, little is known about the effectiveness of community interventions, and further research in this field is needed. There is, however, a growing consensus that such research should start from the paradigm that the current living environments tend to counteract healthy lifestyles. Questioning these environments thoroughly can help to develop new pathways for sustainable health-promoting communities. Against this background, the IDEFICS (Identification and prevention of dietary- and lifestyle-induced health effects in children and infants) study developed and implemented innovative community-oriented intervention programmes for obesity prevention and healthy lifestyle primarily in children aged 2–10 years in eight European countries: Sweden, Estonia, Germany, Belgium, Hungary, Italy, Spain and Cyprus.Materials and methods:The IDEFICS community-oriented intervention study mobilised an integrated set of interventional efforts at different levels of society, with the aim of facilitating the adoption of a healthy obesity-preventing lifestyle. The overall programme has been composed of 10 modules: three at community level, six at school level and one for parents. The main focus was on diet, physical activity and stress-coping capacity. The sphere of action encompassed both children and their (grand) parents, schools, local public authorities and influential stakeholders in the community. All materials for the interventions were centrally developed and culturally adapted.Results:So far, the following has been achieved: focus group research, literature review and expert consultations were done in an early phase as a basis for the development of the intervention modules. The intervention mapping protocol was followed as guide for structuring the intervention research. The overall intervention programmes duration was 2 years, but a longer-term follow-up programme is under development.Conclusions:This large-scale European effort is expected to contribute significantly to the understanding of this major public health challenge.

Human genetic banking: altruism, benefit and consent

This article considers how we should frame the ethical issues raised by current proposals for large‐scale genebanks with on‐going links to medical and lifestyle data, such as the Wellcome Trust and Medical Research Councils ‘UK Biobank’. As recent scandals such as Alder Hey have emphasised, there are complex issues concerning the informed consent of donors that need to be carefully considered. However, we believe that a preoccupation with informed consent obscures important questions about the purposes to which such collections are put, not least that they may be only haphazardly used for research (especially that of commercial interest)—an end that would not fairly reflect the original altruistic motivation of donors, and the trust they must invest. We therefore argue that custodians of such databases take on a weighty pro‐active duty, to encourage public debate about the ends of such collections and to sponsor research that reflects publicly agreed priorities and provides public benefits.

Early childhood electronic media use as a predictor of poorer well-being: a prospective cohort study

IMPORTANCE Identifying associations between preschool-aged childrens electronic media use and their later well-being is essential to supporting positive long-term outcomes. OBJECTIVE To investigate possible dose-response associations of young childrens electronic media use with their later well-being. DESIGN, SETTING, AND PARTICIPANTS The IDEFICS (Identification and Prevention of Dietary- and Lifestyle-Induced Health Effects in Children and Infants) study is a prospective cohort study with an intervention component. Data were collected at baseline from September 1, 2007, through June 30, 2008, and at follow-up from September 1, 2009, through May 31, 2010, in 8 European countries participating in the IDEFICS study. This investigation is based on 3604 children aged 2 to 6 years who participated in the longitudinal component of the IDEFICS study only and not in the intervention. EXPOSURE Early childhood electronic media use. MAIN OUTCOMES AND MEASURES The following 6 indicators of well-being from 2 validated instruments were used as outcomes at follow-up: Peer problems and Emotional problems subscales from the Strengths and Difficulties Questionnaire and Emotional well-being, Self-esteem, Family functioning, and Social networks subscales from the KINDLR (Questionnaire for Measuring Health-Related Quality of Life in Children and Adolescents-Revised Version). Each scale was dichotomized to identify those children at risk for poorer outcomes. Indicators of electronic media use (weekday and weekend television and electronic game [e-game]/computer use) from baseline were used as predictors. RESULTS Associations varied between boys and girls; however, associations suggested that increased levels of electronic media use predicted poorer well-being outcomes. Television viewing on weekdays or weekends was more consistently associated with poorer outcomes than e-game/computer use. Across associations, the likelihood of adverse outcomes in children ranged from a 1.2- to 2.0-fold increase for emotional problems and poorer family functioning for each additional hour of television viewing or e-game/computer use depending on the outcome examined. CONCLUSIONS AND RELEVANCE Higher levels of early childhood electronic media use are associated with children being at risk for poorer outcomes with some indicators of well-being. Further research is required to identify potential mechanisms.

Maternal Employment and Childhood Obesity: A European Perspective

The substantial increase in female employment rates in Europe over the past two decades has often been linked in political and public rhetoric to negative effects on child development, including obesity. We analyse this association between maternal employment and childhood obesity using rich objective reports of various anthropometric and other measures of fatness from the IDEFICS study of children aged 2-9 in 16 regions of eight European countries. Based on such data as accelerometer measures and information from nutritional diaries, we also investigate the effects of maternal employment on obesitys main drivers: calorie intake and physical activity. Our analysis provides little evidence for any association between maternal employment and childhood obesity, diet or physical activity.

Best practice for the pharmacological management of hyperthyroid cats with antithyroid drugs

Pharmacological management of feline hyperthyroidism offers a practical treatment option for many hyperthyroid cats. Two drugs have been licensed for cats in the last decade: methimazole and its pro-drug carbimazole. On the basis of current evidence and available tablet sizes, starting doses of 2·5 mg methimazole twice a day and 10 to 15 mg once a day for the sustained release formulation of carbimazole are recommended. These doses should then be titrated to effect in order to obtain circulating total thyroxine (TT4) concentrations in the lower half of the reference interval. Treated cases should be monitored for side-effects, especially during the first months of treatment. Some side-effects may require discontinuation of treatment. At each monitoring visit, clinical condition and quality of life should also be evaluated, with special attention to possible development of azotaemia, hypertension and iatrogenic hypothyroidism. When euthyroidism has been achieved, monitoring visits are recommended after 1 month, 3 months and biannually thereafter. Cats with pre-existing azotaemia have shorter survival times. However, development of mild azotaemia during the initial course of treatment, unless associated with hypothyroidism, does not appear to decrease survival time. The long-term effects of chronic medical management require further study.

Childhood obesity : ethical and policy issues

Childhood obesity has become a central concern in many countries and a range of policies have been implemented or proposed to address it. This co-authored book is the first to focus on the ethical and policy questions raised by childhood obesity and its prevention. Throughout the book, authors Kristin Voigt, Stuart G. Nicholls, and Garrath Williams emphasize that childhood obesity is a multi-faceted phenomenon, and just one of many issues that parents, schools and societies face. They argue that it is important to acknowledge the resulting complexities and not to think in terms “single-issue” policies. After first reviewing some of the factual uncertainties about childhood obesity, the authors explore central ethical questions. What priority should be given to preventing obesity? To what extent are parents responsible? How should we think about questions of stigma and inequality? In the second part of the book, the authors consider key policy issues, including the concept of the ‘obesogenic environment,’ debates about taxation and marketing, and the role that schools can play in obesity prevention. The authors argue that political debate is needed to decide the importance given to childhood obesity and how to divide responsibilities for action. These debates have no simple answers. Nonetheless, the authors argue that there are reasons for hope. There are a wide range of opportunities for action. Many of these options also promise wider social benefits.

Differential outcome of the IDEFICS intervention in overweight versus non-overweight children: Did we achieve 'primary' or 'secondary' prevention?

The aim of this study was to explore whether the IDEFICS intervention had a differential effect on 11,041 childrens weight trajectories depending on their baseline body mass index status.

Cohort Profile: The transition from childhood to adolescence in European children–how I.Family extends the IDEFICS cohort

Cohort Profile : The transition from childhood to adolescence in European children-how I.Family extends the IDEFICS cohort

Children as Means and Ends in Large‐Scale Medical Research

This paper considers the often-expressed fear that medical research may use children merely as means, and not respect them as ends in themselves - especially insofar as they are deemed less able to consent than adults. The main focus is on large-scale genetic, socio-medical and epidemiological research. The theoretical starting point of the paper is that to be treated as an end in oneself is to be regarded as - and to act as - a participant in cooperative endeavours. This participatory status is certainly connected with individual authority to consent and dissent; and there is no doubt that consent plays an important role when adults participate in many research projects. However, insofar as consent is located within structures of human cooperation, the authority to consent is not a straightforward privilege. Rather, consent is bound up with responsibility for ones choices and commitment to shared terms of cooperation. Given this understanding, it is argued that consent should not be our principal concern when we involve children in research. This is not because of childrens (possible) incompetence to consent as such, but rather because children are still learning how to respect and assess the cooperative terms involved in our institutional lives. Instead, our leading concern should be with the terms regulating their involvement in research. Given suitable safeguards, research is one way in which children may learn what it is to bear responsibilities and to act as an end in oneself - that is, to cooperate with others on reasonable terms and for worthy ends.