Centre for Children's Health Ethics and Law, Queensland Children's Hospital, South Brisbane, Queensland, Australia
J Med Ethics. 2022 Aug;48(8):566-571. doi: 10.1136/medethics-2020-107042. Epub 2021 Mar 19.
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 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.
“晒娃”现象，即父母在社交媒体上分享孩子的新闻和照片，在当代社会越来越流行。目前已经有一些关于儿童对“晒娃”的态度及其对隐私的相关担忧的研究；然而，这些研究大多涉及即将成年、有能力参与的年轻人。因此，患有疾病或残疾的儿童在当前的研究中基本缺席，因此，父母在公共社交媒体平台上分享孩子疾病历程的道德允许性在很大程度上尚未得到探索。在本文中，我使用联合国和乔尔·范伯格（Joel Feinberg）的儿童享有开放未来的权利原则作为我的论点基础来探讨这个问题：患有疾病和残疾的儿童与健康儿童一样享有隐私权、身份权和开放未来的权利，在社交媒体平台上发布他们的疾病信息侵犯了这些权利。我得出的结论是，作为孩子的代理人，父母在保护孩子隐私方面和代表孩子做出医疗决策时一样负有责任。随着社交媒体时代的儿童逐渐成年，考虑那些无法为自己发声的孩子的权利以及“晒娃”对患病和残疾儿童的伦理后果是很重要的。
