RESUMO
Ready access to the internet and online sources of information about child health and disease has allowed people more 'distant' from a child, family and paediatric clinician to inform and influence clinical decisions. It has also allowed parents to share aspects of their child's health and illness to garner support or funding for treatment. As a consequence, paediatric clinicians must consider and incorporate the crowd of opinions and voices into their clinical and ethical reasoning.We identify two key ethical principles and related ethics concepts foundational to this task. We then propose a series of exploratory ethics questions to assist paediatric clinicians to engage ethically with the multiple voices in the clinical encounter while keeping the child's needs as a central focus. Using two clinical hypothetical case examples, we illustrate how our proposed ethics questions can assist paediatric clinicians to navigate the crowd in the room and bring moral reasoning to bear.We highlight a need for specific practical interactional skills training to assist clinicians to ethically respond to the crowd in the room, including to identify and weigh up the harms and benefits of endorsing or going against proposed treatments for a child, and how to discuss social media and online sources of information with parents.
RESUMO
The phenomenon of 'sharenting', whereby a parent shares news and images of their child on social media, is of growing popularity in contemporary society. There is emerging research into children's attitudes regarding sharenting and their associated concerns regarding privacy; however, this research most often involves young people who are approaching adulthood and are competent to participate. As a result, children who experience illness or disability are largely absent from current research, and as such, the moral permissibility of a parent sharing their child's illness journey on a public social media platform is largely unexplored. In this essay, I explore this issue by using the United Nations Convention on the Rights of the Child and Joel Feinberg's principle of the child's right to an open future as the basis of my argument: that children with illness and disability have the same rights as healthy children to privacy, identity and an open future and that publication of their illness on a social media platform violates these rights. I conclude that parents, as surrogate decision makers for their children, have the same responsibilities in protecting their child's privacy as they do in making medical decisions on behalf of their children. As children of the social media generation approach adulthood, it is important to consider the rights of those who cannot speak for themselves and the ethical consequences of sharenting for children with illness and disability.