By Elise Burn.

The gap between our ‘real life’ and the life we portray on social media is widening, with many people curating themed social media accounts to promote a certain aspect of themselves. Many social media influencers curate their accounts to contribute towards the development of their brand. It is not unusual for adults to have many separate accounts dedicated to different aspects of their lives, for example, their work, their hobbies, or in some cases, their illness. Some people use social media to document their illness journey or to raise awareness about a rare condition that they may have.

In 2003, blogger Christine Miserandino published an essay entitled “The Spoon Theory” on her blog But You Don’t Look Sick in which she wrote about living with chronic illness. The Spoon Theory resonated with many people with chronic illness and led to the development of the term “spoonie,” which in contemporary culture refers to a person with chronic illness. Many people identify as “spoonies” and use #spoonie in social media posts that refer to their chronic illness; at the time of writing there are currently 2.5million posts on Instagram tagged with #spoonie. The choice to share one’s illness journey on social media lies with the person with the illness, especially when that person is an adult who is both the account holder and responsible for the content of their posts. But what about situations where this is not the case?

Children are consumers of both health care and social media. Throughout my career in paediatric healthcare, I have observed many changes, both in medical technology and social technology. Advances in medical science and technology have led to increased survival in premature babies and increased survival in medical conditions that had previously been considered terminal. Social technological changes, such as the advent of FaceTime and social media, mean that young people in hospital are no longer as isolated from their family and friends as they have been in the past.

Increasingly, children with illness and disability are featuring on public dedicated social media accounts, usually run by their parents, detailing their journey through acute and chronic illness. Most of these children are too young to consent to having their medical information publicly shared on social media, or the nature of their illness or disability affects their capacity to do so. In paediatric healthcare we accept that children are, in most cases, not competent to consent to their medical treatment and require a surrogate decision maker (a parent in most cases) to provide consent on their behalf. We also accept that the tenet of patient confidentiality applies to children despite their immaturity, whilst acknowledging that a responsible adult must always be included in that circle of confidentiality. The seeming contradiction between children having an undisputed right to confidentiality as it pertains to their healthcare and their parent sharing that information on a public social media account led me to question the rights of non-consenting sick children to privacy.

In my recent JME paper, I ask, is it morally permissible for a parent to share their child’s illness journey on a public social media platform if that child does not have the capacity to consent? The answer to this question is complex and multi-faceted. In asking this, I do not seek to demonise parents who make the decision to share or to radically change the use of social media by those families where illness and disability is present, but rather seek to investigate the perspective of the sick child and their right to privacy. This perspective has not been widely explored in contemporary ethical or medical literature.

The perspective of the sick or disabled child is a very challenging one to obtain or represent, especially in circumstances where cognition is affected, or where death occurs in childhood. In many cases, we defer to the parent to best understand or represent their child’s wants, needs, and rights. In the cases of parental sharing of their sick or disabled child on social media, we may only ever get the parental perspective, unless that child recovers from their illness or lives into adulthood where they can provide their own nuanced perspective. Australian disability advocate Carly Findlay is one such adult who has had a lifelong medical condition and reflected on this very topic in Sydney Morning Herald in 2015, in which she expressed the importance of the decision to share her disability publicly being her own – a choice not available to children whose illness is shared on social media.

In asking this question I seek to start a conversation about children’s rights to privacy in a culture where so much is publicly shared through social media, and specifically about those children who live with chronic illness or disability. One day soon, many of these children will be adults with, I’m sure, much to say.

Paper title: #warriors: Social Media, Sick Children and the Right to an Open Future

Author: Elise Burn

Affiliations: Centre for Children’s Health Ethics and Law, Queensland Children’s Hospital, QLD, Australia

Competing interests: None declared