Given the lack of knowledge about safety and efficacy of many treatments for children, pediatric clinical trials are important, but recruitment for pediatric research is difficult. Little is known about children's perspective on participating in trials. The purpose of this study was to understand the experiences and motivations of young people who took part in clinical trials. This is a qualitative interview study of 25 young people aged 10–23 who were invited to take part in clinical (...) trials. Interviews were audio or video recorded and analyzed using framework analysis. Young peoples' motivations were both personal benefit and helping others. Both incentives appeared to be more complex than expected. We introduce the terms “network of exchange” and “intergenerational solidarity” to describe these motivations. To improve recruitment, professionals should be more open about research opportunities, provide better information, and give young people feedback after the trial has ended. (shrink)

Lucas, Brian This article will consider some of the issues relating to engagement by young people with Catholic Church structures. Within that context, and within the context of a contemporary theology of mission, it will examine the contribution that Cardinal Cardijn's 'see, judge, act' methodology offers to formation of young people for mission. In particular, it will outline some of the ways in which Catholic Mission in Australia has engaged with young people, including the (...) immersion program for senior students. Finally, it will propose a way in which that program might strengthen links to the traditional Cardijn groups. (shrink)

Purpose– The purpose of this paper is to develop a conceptual framework to contextualize young people’s lived experiences of privacy and invasion online. Social negotiations in the construction of privacy boundaries are theorized to be dependent on individual preferences, abilities and context-dependent social meanings.Design/methodology/approach– Empirical findings of three related Ottawa-based studies dealing with young people’s online privacy are used to examine the benefits of online publicity, what online privacy means to young people and the (...) social importance of privacy. Earlier philosophical discussions of privacy and identity, as well as current scholarship, are drawn on to suggest that privacy is an inherently social practice that enables social actors to navigate the boundary between self/other and between being closed/open to social interaction.Findings– Four understandings of privacy’s value are developed in concordance with recent privacy literature and our own empirical data: privacy as contextual, relational, performative and dialectical.Social implications– A more holistic approach is necessary to understand young people’s privacy negotiations. Adopting such an approach can help re-establish an ability to address the ways in which privacy boundaries are negotiated and to challenge surveillance schemes and their social consequences.Originality/value– Findings imply that privacy policy should focus on creating conditions that support negotiations that are transparent and equitable. Additionally, policy-makers must begin to critically evaluate the ways in which surveillance interferes with the developmental need of young people to build relationships of trust with each other and also with adults. (shrink)

(1994). Young people and life in the city. The lessons of political sociology and of the patterns of socialization of young people. World Futures: Vol. 41, No. 1-3, pp. 110-114.

Young people have an enormous stake in the present and future state of Earth. Almost half of the human population is under the age of 25. If young people’s resources of energy, time, and knowledge are misdirected towards violence, terrorism, socially-isolating technologies, and unsustainable consumption, civilization risks destabilization. Yet, there is a powerful opportunity for society if young people can participate positively in all aspects of sustainable development. In order to do so, young (...) people need education, political support, resources, skills, and hope. This volume offers a global perspective on education initiatives by and for young people that promote a transition to sustainability. It includes 38 essays co-authored by 68 contributors from 25 nations, representing a diversity of geography, gender, and generation. "The development of youth leadership has been a central concern of my professional work. Young people have a lot to offer to sustainable development and should participate in planning for our planet’s future. This rich collection of theoretical and practical approaches captures the growing response of young people to this challenge. I am particularly pleased with the attention paid to the role of often-underrepresented regions of the world, to the role of women, and to the Earth Charter in the creating of a peaceful and sustainable future." Julia Marton-Lefèvre, Director General of IUCN (International Union for Conversation of Nature), and former Rector of the University for Peace "This book is a rich, global tapestry depicting the inter-linkages among youth, education and sustainable development. What is particularly interesting is that it shows how education, at all levels, can be a powerful engine for promoting sustainability. This work is an important contribution to the United Nations Decade of Education for Sustainable Development." Goolam Mohamedbhai, Secretary-General, Association of African Universities, and Past President, International Association of Universities "This important and skillfully-prepared book comes at a critical time.... A great strength of this volume is that it blends together theoretical and practical insights regarding education for sustainable development by and for young people. It is written from diverse cultural perspectives from all world regions. Readers, from many fields, especially young people and their teachers, will find it timely and relevant. I hope that it will inspire the younger generation to get involved in seeking solutions to the challenges we face." James Gustave Speth, Former Administrator of the United Nations Development Programme, and Dean Emeritus of the School of Forestry and Environmental Studies at Yale University "It is my hope that you are inspired, as I have been, by Young People, Education, and Sustainable Development: Exploring Principles, Perspectives, and Praxis, for the stories in this volume are full of the possibilities that emerge when we honor and support young people." Ruud Lubbers, Former Prime Minister of The Netherlands, and past United Nations High Commissioner for Refugees. (shrink)

: Though it is being widely argued that expanding young people's capacity to learn is a viable and desirable goal of education, it it not always clear what this means, how it is to be achieved, and how the effectiveness of interventions is to be assessed. It is argued that the capacity to learn should be interpreted as a portmanteau term that comprises a varied set of positive learning dispositions. These are illustrated, and the idea of ?expansion? is (...) glossed in terms of broadening, strengthening and deepening these dispositions. (shrink)

Jones, Kate Too many young people live in aged care nursing homes in Australia because there is a shortage of suitable alternatives. The Young People in Nursing Homes National Alliance confirms this, and advises that one young person is admitted into nursing home care every day. Part two of this article will follow in the next issue of this Bulletin.

One thing an examination of the literature on youth work makes clear is a lack of clarity on youth work's purpose. This study investigated the value of using the concept of telos as an analytical tool to orient youth work towards the right ends. Relevant literature was systematically reviewed. The value of telos in understanding youth work was examined. Common aims of youth work were described. The merits of different goals were assessed to figure out which, if any, is youth (...) work's proper purpose. A telos would provide youth work a clear and cohesive definition, act as a useful guide for good practice, and distinguish youth work from other interventions into young people's lives. The case was made for the telos of youth work to be 'enabling young people to live the good life'. (shrink)

Avon Longitudinal Study of Parents and Children is a birth cohort study within which the Project to Enhance ALSPAC through Record Linkage was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. PEARL incorporated qualitative research to seek the views of young people about data linkage, including their opinions about appropriate safeguards and research governance. In this paper we focus on views expressed about the purpose and composition of (...) research ethics committees. Digitally recorded interviews were conducted with 48 participants aged 17–19 years. Participants were asked about whether medical research should be monitored and controlled, their knowledge of research ethics committees, who should sit on these committees and what their role should be. Interview recordings were fully transcribed and anonymised. Thematic analysis was undertaken, assisted by the Framework approach to data management. The majority of interviewees had little or no specific knowledge of ethics committees. Once given basic information about research ethics committees, only three respondents suggested there was no need for such bodies to scrutinise research. The key tasks of ethics committees were identified as monitoring the research process and protecting research participants. The difficulty of balancing the potential to inhibit research against the need to protect research participants was acknowledged. The importance of relevant research and professional expertise was identified but it was also considered important to represent wider public opinion, and to counter the bias potentially associated with self-selection possibly through a selection process similar to ‘jury duty’. There is a need for more education and public awareness about the role and composition of research ethics committees. Despite an initial lack of knowledge, interviewees were able to contribute their ideas and balance the rights of individuals with the wider benefits from research. The suggestion that public opinion should be represented through random selection similar to jury duty may be worth pursuing in the light of the need to ensure diversity of opinion and establish trust amongst the general public about the use of ‘big data’ for the wider public good. (shrink)

This article reports on Flemish college students’ news orientations and their uses of traditional and new media for news within a public service media environment. We used five homogeneous focus groups that covered variation in news media use. The analysis of the focus groups revealed major differences in news behaviors and attitudes between participants who mainly depended on traditional media for news, and those who also went online for news. While a growing body of research reports on young (...) class='Hi'>people’s increasing use of online media for news, particularly among those that are most disengaged with traditional news media, our findings indicated that only the most eager news-users were motivated to gather information online. Additionally, we found that traditional media, in particular national quality papers and the Flemish public service newscast, were still the main reference points for public affairs information among our participants. (shrink)

Objective: Symptom improvement is often examined as an indicator of a good outcome of accessing mental health services. However, there is little evidence of whether symptom improvement is associated with other indicators of a good outcome, such as a mutual agreement to end treatment. The aim of this study was to examine whether young people accessing mental health services who meaningfully improved were more likely to mutually agree to end treatment.Methods: Multilevel multinomial regression analysis controlling for age, gender, (...) ethnicity, and referral source was conducted on N = 8,995 episodes of care [Female = 5,469, 61%; meanAge = 13.66 years] using anonymised administrative data from young people's mental health services.Results: Compared to young people with no change in mental health difficulties, those showing positive meaningful changes in mental health difficulties were less likely to have case closure due to non-mutual agreement. Similarly, they were less likely to transfer or end treatment for other reasons than by case closure due to mutual agreement.Conclusion: The findings suggest that young people accessing mental health services whose symptoms meaningfully improve are more likely to mutually agree to end treatment, adding to the evidence that symptom improvement may be appropriate to examine as an indicator of a good outcome of accessing mental health services. (shrink)

Today’s youth find it extremely difficult to look beyond the present, in large part due to the precariousness of the labour market. Unconditional basic income, meanwhile, is emerging as the economic and social policy that is attracting most interest as an alternative not only to the conditional minimum income programmes, but also to the increasing unemployment and precarious conditions of employment. This survey study, conducted among students at the University of the Basque Country (UPV/EHU) in 2021 (n = 709), explores (...) the attitudes of young people towards basic income. Findings reveal strong support among Basque youth for basic income, citing its potential to enhance personal freedom and improve living conditions. While previous studies have already found that young people tend to be more supportive of basic income, this research fills a gap in the literature by analysing in depth young people’s attitudes and beliefs about this policy proposal. (shrink)

ABSTRACT This narrative synthesis based on a literature review undertaken for the project ?Creating Citizenship Communities? (funded by the Esmée Fairbairn Foundation) includes discussion, principally, about what research evidence tells us about young people?s definitions of community, of types of engagement by different groups of young people, actions by schools and what they might do in the future to promote engagement. Community is seen as a highly significant and contested area. Young people are viewed (...) negatively by adults but are in some contexts already positively engaged in communities. There seem to be gaps in the literature about what young people understand about community. There is, broadly, some consensus about how to promote engagement. (shrink)

Two qualitative projects have brought together non-directive and semi-directive interviews with 49 young people who had a paranormal experience between the ages of 11 and 18. A sequential analysis shows an emotional and cognitive pattern comprising four stages, accompanied by periods of anxiety. Young people move through those stages that correspond to a cognitive acceptance or rejection of what they are experiencing in order to maintain or re-establish paradigmatic stability. This study complements the many observations linking (...) paranormal beliefs and anxiety, bringing with it the new discovery of a mechanism underlying the link between anxiety and some aspects of paranormal or anomalous experiences in young people. (shrink)

Child sexual exploitation and abuse has grave implications for the mental health and wellbeing of children and young people. It has been linked to a wide range of difficulties which may extend into adulthood. School-based prevention programs that aim to raise awareness are popular, however, have historically lacked robust and consistent evaluation. The purpose of the present study was therefore to explore young people’s experiences of attending a school-based theater-in-education program, and the impact this had on (...) their awareness and understanding of CSEA. Four focus groups of between four to six participants each were conducted with young people from two co-educational State schools in the United Kingdom. The approach of Template Analysis was used to analyze the data, and revealed a number of themes related to the superordinate themes of “Information and Detail Delivered” and “Format and Timing.” The results suggest that participants gained new awareness and understanding of aspects related to CSEA, including other forms of exploitation, as well as how to avoid harm and what to do “if bad things happen.” Participants further reported that the theater performance/live element of the program was particularly impactful, feeling that this was delivered to them at the right time, but suggesting that younger people would also benefit from the important messages. In addition, areas for improvement were identified in terms of the delivery of the program, and the issue of victim blaming. Findings are discussed with a view to practical implications and directions for future research. (shrink)

At a time in which labour markets are becoming increasingly globalised and precarisation processes are altering young people’s working and living conditions, a whole network of public and private agencies are developing different entrepreneurship programmes as the main mechanism to deal with youth exclusion and unemployment. Grounded in two on-going research projects conducted in Europe and Australia, this article proposes a preliminary, thought-provoking engagement with the concept of global grammars of enterprise to examine how the truth regimes are (...) framed and articulated in these networks. We argue that this concept enables us to identify, examine and analyse the shifting, unstable, but always strategic power relations between the governmental discourses on entrepreneurship and the enterprising behaviour and dispositions of persons and groups, and the particular «declensions» and local «translations» of the ideas of entrepreneurship that organisations and young people perform within a process of globalised precarisation.Al albur de la globalización de los mercados laborales, al mismo tiempo que ciertos procesos de precarización están alterando profundamente las condiciones de vida y de trabajo de las personas jóvenes, se despliega toda una red de agentes públicos y privados que buscan fomentar el emprendimiento como principal mecanismo para enfrentar la exclusión y el paro juvenil. Fundamentado en dos proyectos de investigación en curso en Europa y Australia, el artículo se involucra preliminar y provocativamente con el concepto analítico de gramáticas globales del emprendimiento para analizar cómo se enmarcan y articulan los regímenes de verdad de estas redes. Argumentamos que este constructo posibilita abordar las inestables y estratégicas relaciones de poder entre los discursos gubernamentales del emprendimiento y las disposiciones y los comportamientos; las declinaciones particulares y las «traducciones» locales que la juventud y algunas organizaciones afines realizan de ellos en el marco de un proceso de precarización globalizado. (shrink)

The aim of this study is to explore how Greek youth understands their relationship to education, and how this understanding might change as a result of the interplay between participation in different educational/social arrangements and structural factors such as gender, socio?economic background and area of residence. In total, 800 young people (i.e. four groups?students in upper?secondary school, tertiary education, vocational education and training and working young people) were surveyed. The results yield an impressive homogeneity of the (...) young people?s views corresponding to a ?pragmatic? image of schooling, though they are partially differentiated with respect to attitudes and practices. Moreover, boundaries are discerned between the young people following academic and non?academic educational trajectories, and between the learning opportunities provided within and outside the formal educational system. Finally, females appear to be more mobilized, but less satisfied by educational services. These findings are contextualized and discussed against a background of relevant trends in other European countries, as well as of wider social, historical and political forces affecting Greek society. (shrink)

The issues concerning education of children and young people are deeply inscribed into Pope Francis’ profound experience, as he gained knowledge and practised educating in Buenos Aires. He worked there in support of the universal education of children and young people who lived in the so-called barrios and villas miseria, which were the districts of poverty in the suburbs of this metropolis. This and other experiences of Jorge Mario Bergoglio contributed to his decisions to discuss the (...) issues of education in the documents written during his pontificate in the Vatican. The author of the article would like to present the issues connected with education of children and young people in the teaching of Pope Francis. This issue is more relevant than in contemporary times, the emphasis was on upbringing rather than on education. Francis emphasises the importance of education as a method of influencing the development of man. It allows for the conscious and planned influencing of children and young people, while the aim of education is to form certain changes of personality. Pope Francis presents the issue of education in his apostolic exhortation Amoris Laetitia in a particular way, as he introduces ethical, moral and sexual education to the reader. In his encyclical Laudato Si’, the Pope refers to ecological education. Contribution: This research relates to United Nations Educational, Scientific and Cultural Organization’s (UNESCO) sustainable goals with regard to quality education. The article is an attempt to find the answers to the questions concerning the way Pope Francis perceives education and its influence on the development of children and young people, as well as to present its most important aspects. (shrink)

Several arguments have been put forward about the benefits of young people carrying out their own social science research in terms of empowering their voices and their participation. Much less attention has been paid to investigating the understandings young people develop about the research process itself. Seven twelve-year olds carried out self-directed social science research into a topic of their choice. Towards the end of their six months experience, we used a questionnaire and follow-up semi-structured interviews (...) to investigate, from a sociocultural perspective, what the young people thought about being a researcher. Thematic analysis of the interviews identified three themes and eight subthemes suggesting that they were aware of: the need to demonstrate researcher/research integrity ; the need for good interpersonal skills and standards, and good self-management skills (be resilient, agentic, committed and go... (shrink)

A number of popular theories about trauma have suggested rhythm has potential as a mechanism for regulating arousal levels. However, there is very little literature examining this proposal from the perspective of the young people who might benefit. This action research project addresses this gap by collaborating with four groups of children in the out-of-home-care system to discover what they wanted from music therapists who brought a strong focus on rhythm-based activities. The four music therapy groups took place (...) over a 12 month period and each cycle of action and reflection led to adjustments in what activities were offered, as well as exploring different levels of structure and ways of building relationships in the groups. The initial group incorporated a strong emphasis on highly structured rhythm-based activities, but young people found the format difficult to engage with. The second cycle included more opportunities for creativity and self-direction within semi-structured activities which children reported enjoying, but too much freedom also became overwhelming at times. The two groups in the third cycle seemed to balance structure and responsiveness successfully but were also influenced by the introduction of individual sessions prior to group commencement, which was designed to contribute to safety and trust building. Final reflections on the role of rhythm in supporting young people who have had adverse experiences were centred around the ideas of co-regulation. This was qualitatively different to our expectations that practicing rhythm-based activities would lead to an expanded window of tolerance that resulted in less time being spent in either hypo-arousal or hyper-arousal. Instead of entraining to an external rhythm, young people felt safe when their rhythms were matched, even if they were irregular, out of time and unpredictable. The small moments of co-regulation resulted in pleasure, comfort, satisfaction and peace and these moments were highly valued by the young people, who described just wanting to be relaxed and happy. Although not as rhythm-specific as the literature might suggest, music making with trusted adults helped the young people in this study feel more content. (shrink)

This study explores young people’s perceptions of their existential well-being during the transition after leaving care. We use the theoretical framework of ‘existential well-being,’ which is a relational approach. The study deploys participatory action research methodology and involves peer research with 74 young people leaving care aged 17–32 in Finland (2011–2012) and England (2016–2018). The data was gathered through semi-structured interviews and thematically analysed.We identified three inter-linking categories of existential well-being related to the basic issues of (...) being a person: who one is and where one belongs. Self-feeling involves the importance of how one feels about oneself and one’s physical and mental health and security. Self-realisation relates to one’s hopes and the means for making one’s own decisions in everyday life. Belonging concerns the confidence one expresses in one’s supportive social networks.The findings highlight that, alongside the practical issues of out-of-home care, attention should increasingly focus on young people's reflections on their own lives, and an ethics of care should be developed to better meet their needs. These findings argue for the need to further support young people’s psychosocial and mental health in child welfare policy and practice. (shrink)

Young adults in Europe have more difficulty than previous generations to maintain or improve on their parents’ housing situation. Recommodification, financialisation and the withdrawal of the state as housing provider have transformed housing markets and affected the housing situation of young people. By drawing on various data sources, especially on the EU-Statistics on Income and Living Conditions, I aim to present a differentiated assessment and comparison of current housing conditions and problems in Europe with a focus on (...) young people. I argue that a rights-based housing strategy with an explicit intergenerational justice perspective is a promising approach to tackle the housing crisis in a way that meets the housing needs of young people. (shrink)

This article presents the findings of an audience research conducted with 86 young Spanish people aged 15 to 29 years. The investigation examines the modes of reception of television fiction, and the impact of the shows on the viewers. Friends’ influence on the choice of program, and the tendency to use social networks to comment on the shows and to talk about themselves, underline the crucial role played by TV fiction and new technologies in socialization processes. While most (...) participants criticized the propensity of television fiction to build extreme stereotypes, they also showed a clear predilection for Spanish programs, and admitted that their characters often offer inspiration to face everyday problems. (shrink)

The myth of generations of disengaged youth has been shattered by increases in youth turnout in the 2004, 2006, and 2008 primaries. Young Americans are responsive to effective outreach efforts, and this collection addresses how to best provide opportunities for enhancing civic learning and forming lasting civic identities. The thirteen original essays are based on research in schools and in settings beyond the schoolyard where civic life is experienced. One focus is on programs for those schools in poor communities (...) that tend to overlook civic education. Another chapter reports on how two city governments--Hampton, Virginia, and San Francisco--have invited youth to participate on boards and in agencies. A cluster of chapters focuses on the civic education programs in Canada and Western Europe, where, as in the United States, immigration and income inequality raise challenges to civic life. (shrink)

The housing sector is currently under pressure: demographic shifts, urbanisation as well as the availability and costs of housing have led to increasing prices. Concerns are being raised that these rising housing costs could lead to intergenerational conflicts. While older generations often live in their privatelyowned dwellings, younger cohorts struggle to become homeowners, moving the field of housing into the spotlight of national debates. We analyse the importance of housing for Europeans using data from Eurobarometer. Results show that the relevance (...) of housing increased between 2008 and 2018. However, generational differences were found: while older and younger people see housing as an important topic at the country level, only the younger generation seems to be affected personally. Online Appendix. (shrink)

Opinion is divided about the certainty of the evidence base for gender-affirming medical interventions in youth. Proponents claim that these treatments are well supported, while critics claim the poor-quality evidence base warrants extreme caution. Psychotherapy is one of the only available alternatives to the gender-affirming approach. Discussion of the treatment of gender dysphoria in young people is generally framed in terms of two binary approaches: affirmation or conversion. Psychotherapy/exploratory therapy offers a treatment option that lies outside this binary, (...) although it is mistakenly conflated with conversion therapies. Psychotherapy does not impose restrictive gender stereotypes, as is sometimes claimed, but critically examines them. It empowers young people to develop creative solutions to their difficulties and promotes agency and autonomy. Importantly, an exploratory psychotherapeutic process can help to clarify whether gender dysphoria is a carrier for other psychological or social problems that may not be immediately apparent. Psychotherapy can therefore make a significant contribution to the optimal, ethical care of gender-dysphoric young people by ensuring that patients make appropriate, informed decisions about medical interventions which carry risks of harm and have a contested evidence base. (shrink)

Adolescence is a valuable phase of life, not just because it is the phase of learning in school and preparing for a working life. During the COVID-19 pandemic it became clear that the rights, experiences, and lifeworlds of adolescents are considered less important than the needs of school, work, and productivity. However, there is an ethical claim for people to have a good adolescence, and this means that the losses of social contact, experiences, time, and space demanded of adolescents, (...) in order to protect older and vulnerable groups during the COVID-19 pandemic, should be taken seriously. A distinctive quality of adolescence is that it cannot be repeated, nor can these experiences be replicated as adults. First experiences of independence, friendship, love, informality, recklessness, and youthful exuberance are intrinsically valuable and cannot be substituted for later in life. It is therefore not surprising that adolescents have sought and found their own spaces during the pandemic, some of them forbidden, because lock downs and closed social spaces have relegated them to the confines of their childhood bedrooms. In this paper, I explore an ethic of a good adolescence, which was impacted on by the COVID-19 pandemic, and consider what can be learned from this situation. Adolescents are to be taken seriously, their experiences are no less valuable than those of adults, and the losses they have suffered for the benefit of others should be honored. As far as possible, young people should be supported to have a voice in public discourse and in finding spaces to be adolescents. (shrink)

The United Kingdom’s Coalition government has introduced an education policy that is focused on increasing the opportunities to promote and advance social mobility for all children within state education. Raising young people’s aspirations through school-based initiatives is a prominent theme within recent policy texts, which are focused on improving educational outcomes and thus advancing social mobility. This article draws on qualitative data from paired interviews with 32 students in two academies to first investigate if our participants’ aspirations indicate (...) a desire for intragenerational social mobility and second, to explore our participants’ perceptions of the influences of their family background on their aspirations for the future. Analysis of our data highlights the mismatch between our participants’ aspirations for the future and the government’s constructions of what they should aspire to, as articulated in policy texts. By investigating aspirations, as part of a wider project to understand social mobility qualitatively, our data shows the important role of family in shaping our participants’ varied and diverse aspirations that are frequently at variance with government policy. (shrink)

This paper extends the discourse on the importance of the relationship between practitioner and young person as a defining tenet of effective youth work practice, recognising the privileged position occupied by Youth Workers in the social ecology of the young people with whom they work. Reflecting the ethical obligations inherent in this relationship, particularly its focus on enhancing young people’s agency and developmental outcomes, the paper outlines how youth work practice infused with professional love aligns (...) with conceptualizations of an ethic of care. Reporting on interviews conducted with Youth Workers practicing in different settings across one local authority area in the UK, the paper articulates how practitioners’ ethic of care shapes their work with young people, and the extent to which love features as an element of their professional practice. Practitioners describe their motivation to express care that extends beyond legalistic interpretations of their ‘duty of care’ towards young people, using the language of care, love and nurture almost interchangeably. The paper demonstrates the importance of inclusion and reciprocity as fundamental elements of ethical practice, as well as the need to infuse practice with hope, suggesting the value of an affirmative ethic to complement a focus on love and care. (shrink)

What should we do about children and young people who want to be tested for incurable, adult onset, genetic disorders? In particular, what should a general practitioner do if he or she believes the young person is competent to decide, but the regional genetics unit refuses to test anyone under 18? In this article I discuss such a case (drawn from actual practice, but anonymised), and consider the arguments for and against allowing the young person to (...) be tested in terms of good practice, case and statute law, empirical evidence, and ethics. (shrink)