Over the last decade, there has been an explosion of digital interventions that aim to either supplement or replace face-to-face mental health services. More recently, a number of automated conversational agents have also been made available, which respond to users in ways that mirror a real-life interaction. What are the social and ethical concerns that arise from these advances? In this article, we discuss, from a young person’s perspective, the strengths and limitations of using chatbots in mental health support. We also outline what we consider to be minimum ethical standards for these platforms, including issues surrounding privacy and confidentiality, efficacy, and safety, and review three existing platforms (Woebot, Joy, and Wysa) according to our proposed framework. It is our hope that this article will stimulate ethical debate among app developers, practitioners, young people, and other stakeholders, and inspire ethically responsible practice in digital mental health.
Context The 1989 UN Convention on the Rights of the Child states that children have the right to be heard in all matters affecting them. The Convention inspired a surge in research that investigates young people's perspectives on health and wellness‐related concerns and that involves children as ‘co‐researchers'. Young people's advisory groups (YPAGs) are a widely used method to enable young people's involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups. Objective In this paper, we provide a step‐by‐step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People's Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co‐production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact. Results We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co‐production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on‐going evaluations on the impact of the group on both the young people and the research. Conclusion Adopting a critical and reflective attitude can increase researchers' capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience's needs and priorities.
Background: Since the 1990s, increasing research has been devoted to the identification of biomarkers for autism to help attain more objective diagnosis; enable early prediction of prognosis; and guide individualized intervention options. Early studies focused on the identification of genetic variants associated with autism, but more recently, research has expanded to investigate neurodevelopmental markers. While ethicists have extensively discussed issues around advances in autism genomics, much less ethical scrutiny has focused on research on early neurodevelopment and on the interventions being developed as a result. Objectives: We summarize the current state of the science on the identification of early markers for autism and its potential clinical applications, before providing an overview of the ethical issues arising from increasing understanding of children's neurodevelopment in very early life. Results: Advances in the understanding of brain and behavioral trajectories preceding later autism diagnosis raise ethical concerns around three themes: (a) New models for understanding autism; (b) Risks and benefits of early identification and intervention; and (c) Communication of early concerns to families. These ethical issues should be further investigated in research conducted in partnership with autistic people and their families. Conclusions: This paper highlights the need for ethical scrutiny of early neurodevelopmental research in autism. Scrutiny requires expertise and methods from the basic sciences and bioethics, as well as constructive collaborations among autistic people, their parents, and autism researchers to anticipate early interventions that serve the community's interests and accommodate the varied experiences and preferences of people on the spectrum and their families.
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