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#warriors: sick children, social media and the right to an open future
  1. Elise Burn
  1. Centre for Children's Health Ethics and Law, Queensland Children's Hospital, South Brisbane, Queensland, Australia
  1. Correspondence to Elise Burn, Queensland Children's Hospital Centre for Children's Health Ethics and Law, South Brisbane, QLD 4101, Australia; elise.burn{at}


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.

  • children
  • confidentiality/privacy
  • disability
  • ethics
  • information technology

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Social media platforms such as Facebook, Instagram and YouTube are a popular and widely used means to share our lives with friends, family and members of the community, both locally and globally. An emerging phenomenon among social media users is that of ‘sharenting’, in which parents share news, images and videos of their children via social media. In contemporary Western cultures, sharenting often begins earlier than the birth of a child, with parents sharing ultrasound images on social media.1 While most parents choose to share their children’s lives in a relatively private way by using privacy settings, some parents choose to do so publicly.

The impact sharenting has on children is beginning to be explored in contemporary academic literature, largely from a legal perspective, and children of the social media generation are coming to an age where they can offer their own insights into sharenting. What has not been explored is the population of children with illness and disability whose parents run dedicated public social media accounts documenting their illness journey, a growing demographic on social media sites. These children have a different experience from healthy children, with the happy aspects of their lives being shared and their most challenging and intimate vulnerabilities. Some of these children will never develop a voice to share their own thoughts on sharenting because their illness or disability will permanently affect their capacity to do so, or they will experience an early death. Here a unique clash between a parent’s right to make choices for their child and a paediatric patient’s right to privacy and confidentiality emerges. For most children receiving healthcare, their parents become the gatekeepers of both treatment decisions made on their behalf and their privacy. Young children, particularly those under the age of 7, are not considered autonomous due to their developmental immaturity and state of dependence, and consequently do not have the capacity to provide consent to healthcare or the sharing of information.2

In 1980, Joel Feinberg introduced the principle of a child’s right to an open future,3 which differentiates between rights that are exclusive to adults, rights exclusive to children and rights that are common to both adults and children. Feinberg identifies a subclass of rights for children that he calls ‘rights in trust’, which a child will be able to invoke when they reach adulthood or when they are more capable, and argues that parents should not make choices for their children that may restrict these future rights. Thus, Feinberg argues, a child has a ‘right to an open future’.3

In this essay, I examine a child’s right to privacy as one aspect of their right to an open future in the following context: (1) the child has a medical condition that is potentially life limiting due to heavy burden illness or disability: for example, childhood cancer and neurodegenerative disorders; (2) the child’s capacity to consent is limited due to age, illness or disability; and (3) the child’s parent or caregiver chooses to share the child’s illness journey via dedicated illness social media accounts in the child’s name only: that is, I will not consider incidental sharenting via a parent’s personal social media account. While I acknowledge research into relational autonomy and relational identity as a significant exploration of the parent/child relationship, I will not consider this within the scope of this essay, nor will I explore the significance of a parent’s identity as it relates to parenting a child with illness or disability and beyond the death of a child. I will use the terms illness and disability where relevant but acknowledge that both terms apply interchangeably in most circumstances.

The United Nations Convention on the Rights of the Child

The United Nations Convention on the Rights of the Child, hereto referred to as the UNCRC, has been in effect since 1990 and has become the key reference for discussions of the rights of a child. The UNCRC includes 54 articles pertaining to children’s rights, two of which I will specifically focus on for this essay. The UNCRC stipulates that a child has both a right to preserve his identity through Article 8, as well as a right to the protection of his privacy in Article 16. The UNCRC defines the scope of identity as including ‘nationality, name and family relations’,4 and I derive my concept of identity in this essay from this definition. Article 16 of the UNCRC states that ‘no child shall be subjected to arbitrary or unlawful interference with his or her privacy, family, home or correspondence, nor to unlawful attacks on his or her honour and reputation’.4 While the document does not specifically define privacy, it does acknowledge that a child has the right to legal protection against interference with their privacy, and against attacks towards honour and reputation. This is reflected in contemporary legal practice whereby a third party has breached the privacy of a child, however, not in cases where that breach has been undertaken by a parent.5 In such scenarios, parental rights to control the upbringing of their child are often considered before a child’s right to privacy.6 I recognise privacy as being concerned with access to one’s information and control over one’s information7 and that a child’s interest in privacy is founded in both their welfare and in contributing to the formation of intimate personal relations as they grow and develop.

Given that the UNCRC was ratified in 1990, it does not consider the influences digital technology and social media has had on the rights of the child. In 2019, Australian legal academic Cassandra Seery wrote a submission to the Committee on the Rights of the Child proposing the consideration of the impact of the digital environment as it relates to children’s rights.8 In her submission, Seery proposes that the UNCRC consider the implications of the dissemination of children’s personal information by non-state actors, such as parents, and the consequent impact on children’s rights. The UNCRC predominantly considers state responsibilities in ensuring the rights of the child are upheld, and does not recognise (beyond state interference in removing children from the care of parents where significant harm is caused) that sometimes it is parents who violate their children’s rights, particularly when it comes to their identity and their privacy. Nonetheless, the UNCRC provides a solid grounding of children’s rights that remains relevant even within the context of the contemporary digital environment.

Children’s rights and Feinberg

Joel Feinberg classifies rights into four categories. The first category of rights includes those that are common to both adults and children. Feinberg calls these A-C-rights: for example, the right not to be killed or stolen from. Rights that apply only to adults, or A-rights, are based on legal rights, such as the right to vote or to drink alcohol. C-rights are rights that apply to children, although Feinberg acknowledges that these rights are not distinctly children’s rights, but the rights of all those who may not be autonomous regardless of their age, such as adults with severe cognitive disability. Feinberg divides children’s rights into two subclasses, the first being dependency rights, such as rights to food, shelter and protection. The second subclass of C-rights is what Feinberg calls ‘rights-in-trust’. These rights are fundamentally the same rights as A-rights, except that these rights cannot be exercised by children when they are children and must therefore remain in trust for the child until he is capable of exercising them. Feinberg states:

When sophisticated autonomy rights are attributed to children who are clearly not yet capable of exercising them, their names refer to rights that are to be saved for the child until he is an adult, but which can be violated ‘in advance,’ so to speak, before the child is even in a position to exercise them. The violating conduct guarantees now that when the child is an autonomous adult, certain key options will already be closed to him.3

Feinberg cites an example whereby an infant holds a right to self-locomotion (of which he is presently unable to invoke due to his developmental immaturity), that would be violated if one were to cut-off his legs during infancy.3 Overall, this subclass of C-rights is what Feinberg calls a child’s ‘right to an open future’.3

Feinberg acknowledges that the right to an open future is somewhat vague, as parents will inevitably make some choices for their children that will close future options without violating their right to an open future.3 For example, if a parent chooses to have their child surgically sterilised as a child they violate their child’s future A-right to reproduce; however, if they make a choice for their child to participate in school swimming squad rather than an elite swimming squad they may close their child’s future as an Olympic swimmer without violating their right to an open future. The basis of this difference lies in the child’s interests. Feinberg proposes two types of interests: welfare interests which are those associated with practical aspects of living such as physical health, engagement in social intercourse, financial security and a certain amount of freedom from interference and coercion; and ulterior interests, which are those associated with aspirations and goals such as successfully raising a family, building a dream house and achieving spiritual grace.9 Ulterior interests must follow from welfare interests because one must have the requisites for continued well-being in order to formulate goals and aspirations. This understanding of interests correlates with Feinberg’s principle of a child’s right to an open future. Welfare interests align with the basic principle of C-rights or dependency rights in the first instance; however, a child’s right to an open future is also a welfare interest, for a child is unable to pursue ulterior interests in his future if his welfare interests are violated while a child. Children have a present interest in their welfare, such as being fed, clothed and receiving healthcare and education, in order for their future to remain open until they are able to autonomously formulate goals and aspirations, in which they also have a (future) interest. So, for children whose welfare interests are violated in childhood, their right to an open future, in which they may pursue ulterior interests, is also violated. Privacy is a welfare interest, as a welfare interest is ‘the basic requisite of a man’s well-being’,9 and privacy is a necessary condition in which to establish well-being, and a right according to the UNCRC that children possess. The value in Feinberg’s argument for my purposes is in preserving a child’s future autonomy and self-determination such that their open future has not been violated through the public sharing of their medical details, in which they have a welfare interest.

The child’s right to an open future can be violated in a number of ways when a parent shares their child’s illness journey on a dedicated social media account. One of these is by using the child’s name, and therefore their identity, in conjunction with their illness in a way that violates their right to an illness-free future if that is medically possible. If, for example, Jane’s mother sets up a public Instagram account (@janescancercrusade) and shares Jane’s journey through childhood leukaemia, this account may be easily found through a Google Search of her name once she reaches adulthood. This means that future employers, education facilities, friends or life partners have access to private information about Jane that she has not chosen to disclose and that she has no control over, especially if the information found has been shared by others from the original social media account. People who access this information without Jane’s knowledge or consent may infer information about Jane (factual or otherwise) related to her employability, health status or fertility, for example, that they do not have a right to know. Especially by the time Jane reaches adolescence or young adulthood, the details of her childhood illness are hers to disclose and this decision is denied to her if this information has been publicly shared in her name while she was too young to make such decisions.

Disability and illness in childhood

I accept that children with illness or disability have the same rights to identity and privacy as healthy children, and that therefore all children, regardless of their health status, have a right to an open future. First, let us consider the case of a child with a potentially temporary illness, such as some instances of childhood cancer where a full recovery is expected following treatment. In such cases, interests relating to identity and privacy are preserved for the future child, and the subsequent future autonomous adult this child will become. While a young child may not understand or value their identity or privacy during such a time, the future adult will come to appreciate these interests. Respecting the future autonomous choices of a competent adult relies on the protection of these interests at a time when they were not competent to protect these interests themselves, thus respecting a child’s right to an open future. In this case, the interests relating to identity and privacy for a child with a significant but temporary illness are the same as those a healthy child would possess, and as such contribute to the child’s right to an open future.

For a child with a significant cognitive disability, what are his interests when it comes to identity and privacy? Both identity and privacy are welfare interests according to Feinberg’s description of interests, as having both an identity and privacy is a requisite condition to well-being rather than being aspirational or goal oriented. If a child has such profound cognitive disability that he has no conception of his own identity, and is not expected to develop such a conception, is it within his interests to preserve his right to identity and by extension his privacy? One might argue that such a child has no such interests if these can never be understood or valued by the child now or in the future, and that as a result these interests and any subsequent rights are therefore arbitrary or simply do not apply. Similarly, if there is no future autonomous adult to preserve these interests for, as in the case of early death, these interests have no present intrinsic value to this child. Feinberg considers that a person’s interests can be harmed even if they have no awareness of the harm occurring, and that interests can be harmed even after the death of a person. To illustrate this, Feinberg uses an example of how the spreading of libellous information about a person to a group whose good opinion that person covets can harm their interest in a good reputation, even if the person never learns this has occurred.9 Similarly, Feinberg states that interests may be harmed even when the subject does not exist because they are no longer alive, and that in this way a person’s interests can survive them.9 Feinberg’s arguments predominantly centre around harm to a person’s ulterior interests after death, as it is reasonable to expect that a person’s welfare interests die with them. However, I argue that a violation of a person’s privacy, which I have previously described as a welfare interest, can still harm the person beyond their death. This is because privacy is central to the shaping of one’s identity, and a person’s identity remains their own even posthumously. If a person’s privacy is violated without their knowledge, as is most often the case for children with profound disability whose illness is publicised on a social media platform, they are still being harmed. Therefore, following Feinberg, a child with a severe cognitive disability does still have an interest in both his identity and privacy that can be harmed without his knowledge while he is alive, and that these interests could survive him beyond his death. Both in the cases of limited awareness and early death, a child maintains the same interests and therefore rights to identity and privacy as a healthy child, or a child with a temporary illness, and these interests are not diminished by his cognitive state.

Social media and illness

Prior to the ease of instant uploading through Facebook and Instagram, blogging, a form of online journaling, was a common way to share specific and focused information. Since the inception of blogging in the late 1990s, adults have used blogs to document their own experiences with illness, a trend that has grown in popularity and has easily translated into vlogging or sharing through social media. Studies of the use of social media by adult subjects have found that such technology has benefits of enabling self-reflection, raising awareness of health conditions, inspiring others and encouraging strength between patients, and forming a community of people with similar experiences when going through a frightening and isolating period of illness.10 This practice of illness sharing among adults is also common among the population of children with illness of all ages; however, it is the illness experience of the child being shared by the parent, often through their lens of interpretation and experience, rather than the child’s own experience being shared. This means that accounts in the name of the child present a narrative about the child and their illness that the child has no control over and that they have not consented to, thus resulting in a parent’s violation of their child’s right to both their identity and medical privacy. In order to mitigate some complexities surrounding consent, platforms like Facebook and Instagram implement a minimum age of 13 years in order to open an account; however, this is easily circumvented by both children and adults, especially by parents setting up accounts in their child’s name.

For parents of children with illness or disability, their sharenting behaviours are primarily a means of seeking support that is difficult to obtain from healthcare services,11 such as engagement with other families that share the same lived experiences. These behaviours also involve raising awareness of medical conditions affecting children,12 though the literature is very scant in this area. In themselves, these are reasonable justifications for parents to share their own experiences in caring for and raising children with illness and disability, particularly if they are doing so through their own social media accounts and applying privacy settings. When a parent does this using a social media account created specifically for a child and their illness, they are both infringing on the child’s right to their own identity and their right to an open future. This is because they are forming an inextricable link between the child and their illness which the child may not wish to be public in the future. While it may seem a simple argument that the child may choose to remove this information from the internet when they reach adulthood, this can be a virtually impossible task, especially when information has been saved, shared and reposted by other users.

Research into sharenting is beginning to emerge; however, to date it has predominantly focused on the parental perspective by examining their motives for sharenting. Common themes identified in this research are the involvement of family with the raising of children, showing off with one’s children, building on one’s self-presentation, receiving social support and collecting memories.13 Some studies have explored children’s reactions and responses to their parents’ sharenting behaviours, although these studies have primarily occurred among a population of children competent to evaluate and share their ideas. One study examined adolescents’ responses to their parents’ sharenting, which found that adolescents frequently report being embarrassed by pictures their parents share online, being concerned about their privacy—particularly as they use social media to shape their own identities—and being frustrated by their parents’ poor understanding of privacy settings.13 While there is little research pertaining to sharenting of children with illness and disability, one qualitative study undertaken by van der Velden and El Emam that explores the use of social media by adolescents with chronic illnesses found that young people purposefully exclude information pertaining to their illness from their social media accounts, concluding that young people do not want their online identities linked with their chronic illness and that they value their privacy, particularly as it pertains to their health.14 Another study explored the motivations of families who share their experiences of living with children with developmental disabilities via YouTube. This study identified four primary reasons parents share in this manner: to connect with audiences by presenting an authentic view of life with a child with disability; to support other families by sharing their lived experience; to advocate for social acceptance and to raise public awareness of disability; and to justify income generation and child involvement in YouTube content.12 This study was comprehensive in its exploration of publicising a child’s life with disability by their parent, recognising the inevitable one-sided perspective that comes with such research—only the parent is capable of providing a perspective. In this way, parents are required to become a ‘voice’ for their child, when their child is unable to use their own voice due to developmental stage or disability or will never do so. Here, parents contribute to developing the digital identity of their child, however, do so primarily through the promotion of their illness rather than through their personality and other attributes. Borgos-Rodriguez et al found that parents associate the child’s disability with their online identity through the inclusion of the child’s disability in the YouTube channel’s name, for example, ‘Autism Mother’, thereby aligning the family collectively with the child’s disability.12 This promotes the child’s disability as central to both the child’s identity and the identity of the family, and violates a child’s right to an open future by inextricably linking them with their disability. This also links all family members with one child’s disability, although further discussion on this is not within the scope of this essay.

Incentives to share

There is emerging literature pertaining to the involvement of children on family-run social media accounts. Crystal Abidin has explored the phenomenon of family influencers on social media and identified the most common justifications made by parents for involving their children in social media. Parents’ common justifications for involving their children in social media are: that their children are having fun and are willing participants in the content; that they allow their children to drive the narrative of domestic-based content; that they demonstrate their children’s consent in participation or disallow children to be involved as a form of discipline; and that due to the domestic nature of their content their children are still ‘normal kids’.15 These justifications do not apply to children with disability that feature on an account specifically about their disability. First, particularly with a child with severe cognitive and physical disability, there can be no assurance that they are willing participants in the social media account. They also do not have the capability to decline their participation, or physically leave the space in which the content is being made. Children with illness that does not impede cognition, however, may be able to be a willing participant in the content but without proper understanding of the way in which the content is driven by their illness rather than by their personality. An illness is something that a child has and is not who they are. The child is still the same person without her illness, but the illness cannot exist externally to the child. Second, it is important to recognise that these children do not drive the narrative of these accounts, rather, their illnesses drive the narratives of these accounts, such that if a child were to recover from her illness the account could not exist in its original form. This could affect the popularity of the account, such that if a parent is receiving some benefit from running the social media account (such as financial) it may not be in the parent’s interest (financial at least) for the child to recover. This opens the possibility for discussions surrounding parents’ use of social media to document harm they are causing to children, such as in cases of ‘Munchausen by Proxy by Internet’.1 This is not within the scope of this essay but is an area that warrants research. In the same way that the child did not make the choice to have illness or disability, nor do they have the choice to drive the narrative of the account when it is primarily illness focused. Third, I argue that if a child does not have the capacity to consent to their medical treatment and require a surrogate decision maker to do so, they also do not have the capacity to consent to having the details of their medical treatment publicised. Finally, the term ‘normal kids’ is a loaded and challenging term to define. Children understand the concept of normality in the context of their own lives, such that every child experiences life in a way that they believe to be normal. Normality for children is highly subjective. This means that undergoing cancer treatment or living with a disability may be ‘normal’ to that child. The interpretation of these lives by adults is what changes the perspective. If I, as an adult, am viewing an Instagram account documenting a child’s experience with cancer, it is precisely the ‘abnormal’ aspects of her life, that is, her cancer treatment, that I find most compelling.

If a parent makes a conscious decision to forego a right to privacy, by publicly sharing their family life, including their children, via a public social media account, does this decision supersede any rights of the child to privacy? Gligorijević argues that a ‘child’s human right to privacy should not be rendered conditional upon another’s wishes and behaviour or control and consent’.5 She argues that a parent’s choice to engage in ‘sharenting’ demonstrates at the very least an ignorance or indifference to the protection of their child’s privacy, and that such decisions can lead to a sense of loss of control in children.5 As the UNCRC stipulates, a child has a right to preserve his or her identity, including name, without unlawful interference.4 Using a child’s name, and therefore identity, as the basis for the social media account (eg, Jane’s Cancer Crusade) is both claiming and representing that child’s identity without their consent while simultaneously sharing confidential medical information about them. Any pictures or information posted on that social media account contributes directly to the identity of the child through the attribution of those pictures and information to that child’s name. Highlighted here is a gap between a parent’s intention in creating such accounts (in most instances parents’ intentions are good) and the potential consequences for the child in being presented publicly in a format that is beyond their control. A further question in this space pertains to who holds the responsibility in bridging this gap (if anyone at all), and particularly whether assessment of parental sharenting and education regarding outcomes should be undertaken by healthcare professionals in the case of sick and disabled children. Answering this question is beyond the scope of this essay but warrants further investigation and research.

The right to be forgotten

In 2012, the European Commission, the legislative branch of the European Union, published ‘Proposal for a Regulation on the Protection of Individuals with Regard to Processing of Personal Data and on the Free Movement of Such Data’.16 This publication included the ‘right to be forgotten’. This right has been integrated into law such that a person has a ‘right to have their personal data deleted when these data were voluntarily (or not) made available on the Internet’.16 Critics of the right to be forgotten argue that it is in conflict with a right to free speech; however, those in favour claim that it reasserts a human instinct for redemption and forgiveness.17 Decisions invoking the right to be forgotten are made based on the value and relevance of information posted online, rather than based on content that is defamatory or considered a violation of privacy. This means that information that is defamatory will not be removed from the internet under the right to be forgotten if it is still considered relevant, while information that is no longer considered relevant, for example, an online newspaper’s reference to an old debt that has since been paid, would qualify for removal. The court can still rule in favour of keeping specific information public and online if it is deemed relevant, or in the public interest.

Stacey Steinberg has conducted extensive research from a legal perspective in the area of sharenting, social media and a child’s right to privacy. She cites the right to be forgotten as relevant to cases of sharenting, however, acknowledges that currently the law in most countries places the rights of parents above those of children’s rights to privacy, and concludes that consequently there would not be much value in such a right for children.6 For countries in which the right to be forgotten is written into legislation, children could enact this right when they reach adulthood, thereby reducing and reframing the digital footprint that has been created by their parents.18 Steinberg argues that from a legal perspective in the USA, the principle of the right to be forgotten is in conflict with the First Amendment to the US Constitution—that is, the right to free speech—and that in applying the right to be forgotten to sharenting situations one needs to determine whether posts made by parents qualify as ‘speech’ or ‘data’. Steinberg explains that the USA and Europe have opposing definitions here; the USA defines public information including information compiled from a search engine as ‘speech’, while in Europe the same information qualifies as ‘data’.6 Steinberg argues that as long as a child is a minor, posts by parents are more likely to meet the criteria for speech in the USA, and therefore the parent’s right to freedom of expression prevails. However, as the child ages and begins to take ownership of his own digital presence, these posts could be considered data on the proviso that they are no longer necessary or relevant, and be therefore removed under the right to be forgotten.6 It is worth noting that the right to be forgotten considers information in the public interest as relevant and therefore not subject to removal. This poses a question about viral content featuring children, or children’s social media accounts that have gained significant public following (with thousands to millions of followers), as it is not clear whether these would qualify as being in the public interest and would consequently trump any right an individual has to privacy or to be forgotten. As previously mentioned, cases such as this have not been tested in courts. As Steinberg asserts, invoking the right to be forgotten only applies to children in a sharenting context where their right to privacy has already been violated by their parents. If an adult (as a former child) has to engage the law in order to assert control over their digital identity, their right to privacy may be breached twice—first through the sharenting of data they are trying to reclaim, and second through any publicity relating to the legal proceedings. There is an irony that in an effort to have his name removed from Google Search results where they related to an old debt, Mario Costeja Gonzales’2 name is now included in most literature pertaining to the right to be forgotten, with this literature including details of the old debt.

Parents may choose to document their child’s illness or disability through a dedicated social media account precisely so they are not forgotten, especially if it is expected that the child will not live a long life. Similarly, parents of children with severe cognitive disabilities who are unable to demonstrate their personality in an outwardly expressive manner may use such an account to develop and share the personality that they understand their child to have, and that those outside the family cannot see. I argue that a child’s right to an open future is relevant until the moment a child dies, at which point their future is closed. Let me propose a thought experiment in which at some moment in the future, maybe tomorrow, next week or next year, a magic pill is developed which instantly cures any illness in children, and provides a child with the ability to communicate their experiences with illness and disability where previously they had not been able to.3 Such a pill would provide children with a future that resembles those of most healthy children where it is not expected to be influenced by ongoing disability or death. In a scenario in which this pill is to be developed in the future, any child’s future must be considered open and to have potential until a point whereby it is inextricably closed by death. Therefore, every child has a right to an open future, and therefore a right to privacy, at least until the moment of their death (and arguably beyond as discussed previously), by which point their future no longer exists in a physical sense. Exploration of the continuation of a digital self beyond death is not within the scope of this essay. Parental use of social media in the examples given above is understandable; however, the use of a child’s name and therefore their identity in a public account breaches their right to privacy, and subsequently their right to an open future while they are alive.

An insight into the future?

Due to increased use of social media, sharenting has become increasingly prevalent in recent years. This makes the practice of sharenting particularly relevant to the current generation of children and young people. In much the same way that the wish for children conceived via anonymous sperm donors to know their genetic heritage was unforeseen at a time that in vitro fertilisation technology was developing, the future wishes of children whose illnesses and disabilities are currently being shared on social media are unknown. Australian disability advocate, Carly Findlay, wrote about this issue in 2015.19 She identified that most representations of children with illness or disability on social media were either related to the burden of care they required, or promoted children with disabilities as an inspiration; this phenomenon is referred to as ‘inspiration porn’20 by disability advocates. Findlay states, ‘I would be mortified if my parents shared my condition at length (and publicly) as a child or an adult.’19

Some researchers are beginning to investigate the impacts of sharenting on children and young people; however, there are very few studies in this area, and those that have included the viewpoint of children and young people with illness or disability are limited in number. One study by Ouvrein and Verswijvel13 used focus groups with adolescents to ascertain their responses to sharenting. They found that the two primary concerns of adolescents were the way their physical appearance was portrayed, over which they had no control in sharented content, and their privacy. These young people were capable of self-advocacy and were discussing sharenting on their parent’s accounts. A similar study has not been conducted on sharenting via accounts created by parents in their child’s name. One previously discussed study analysing parents of children with developmental disabilities on YouTube identified that the choices of parents to share their child’s experiences could be interpreted as important cultural work regarding representation and reimagination of disability. However, the authors of this study acknowledge that it was limited to the views and voices of the parents, rather than the children with disabilities themselves.12

It is impossible to know how children with illness or disability will respond to their parents’ sharenting unless we ask them. This area is ripe for future research, particularly as some of these children will soon be reaching an age where they can articulate a position on their experiences. For those who currently do not have a voice in this issue, specifically children who are too young or too unwell, we can extrapolate from the work of disability advocates such as Carly Findlay, who has argued for a right to her own identity and privacy, and recognise that regardless of ability, privacy is a necessary constituent of a child’s right to an open future.


The modern culture of sharenting is of growing ethical significance in conversations about children’s rights. Some parents create specific social media accounts in their child’s name to document and share their child’s life. Increasingly, this form of sharenting involves accounts dedicated to a child’s illness or disability. The implications of sharenting on children with illness or disability have been little explored within contemporary literature, and as children who have experienced this particular kind of sharenting approach adulthood, it is the right time to carry this research further. History has shown us that children do value their rights when they come to an age where they can appreciate them and wish their parents had afforded them this consideration. Parents love their children and want what is best for them. Parents are fiercely protective of their children and are most often their children’s best advocates. However, in the social media age, parents are also the most likely people to violate their child’s right to privacy. As a result, parents, particularly those of sick and disabled children who cannot and may never assert their own autonomy, have a responsibility to protect their child’s right to privacy, their identity and an open future.

Ethics statements

Patient consent for publication


This research essay was completed as part of a Master of Bioethics through Monash University, Melbourne, Australia. The author is very grateful to the support and valuable feedback she received throughout this project from her supervisor, Dr Peter Douglas.



  • Contributors This work was undertaken as a Masters research project. All work is the author's own, with draft review and feedback provided by Dr Peter Douglas from Monash University, Melbourne.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • See the work of Dr Marc Feldman and Aideen Lawlor for example.

  • Gonzales was the first person to invoke the right to be forgotten in the Court of Justice of the European Union and won his case.

  • Such a thought experiment does demonstrate ableism and does not consider the value of people with disability within a society, however, is used in this context to demonstrate the importance of the right to an open future for all children regardless of their capacity to demonstrate and participate in such a future.

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