raises issues of data sharing and control (Press Complaints Commission. 2011, 2009), the potential role of advance decisions and the implications of leaving a ...
Challenges of ethical and legal responsibilities when technologies’ uses and users change: social networking sites, decision-making capacity and dementia Abstract: 200 words, total word count 8,201 Successful technologies’ ubiquity changes uses, users and ethicolegal responsibilities and duties of care. We focus on dementia to review critically ethicolegal implications of increasing use of social networking sites (SNS) by those with compromised decision-making capacity, assessing concerned parties’ responsibilities. Although SNS contracts assume ongoing decision-making capacity, many users’ may be compromised or declining. Resulting ethicolegal issues include capacity to give informed consent to contracts, protection of online privacy including sharing and controlling data, data leaks between different digital platforms, and management of digital identities and footprints. SNS uses in healthcare raise additional issues. Online materials acting as archives of ‘the self’ bolster present and future identities for users with compromised capacity. E-health involves actual and potential intersection of data gathered for the purpose of delivering health technological support with data used for social networking purposes. Ethicolegal guidance is limited on the implications of SNS usage in contexts where users have impaired/reduced capacity to understand and/or consent to sharing personal data about their health, medication or location. Vulnerable adults and family/carers face uncertainty in regard to consent, data protection, online identity and legal liabilities. Ethicolegal responsibilities and duties of care of technology providers, healthcare professionals, regulatory bodies and policymakers need clarification. Keywords: Decision-making capacity, ethics, law, privacy, social networking sites, dementia
Introduction Human interactions with digital technologies provoke ethicolegal issues over the technologies’ uses, users, provider/user relations and the moral values embedded in them. As technologies, uses and users change, often in unanticipated fashions, new questions arise. Rapid developments in technologies, uses, users and provider/user relations characterise social networking sites (SNS). Regulatory governance frameworks have not kept pace. Altered uses and users lead to unforeseen consequences,
rendering resolution of the consequent ethicolegal issues crucial as SNS use becomes ever more widespread. Finding appropriate theoretical frameworks and infrastructure to govern digital technologies is challenging. Uses, users, provider/user relations, the moral values embedded in SNS and how each of these alters over time each gives rise to separate ethicolegal concerns. For instance, undesirable and unintended uses of SNS, as for purposes like sexual grooming of minors and other anti-social behaviour, demonstrate the difficulties of applying existing laws in the context of digital technologies (Hart, 2010, Mitchell et al 2010, Patchin and Hinduja 2010, Reilly 2011). When SNS scholarship addresses ethicolegal issues, these typically concern user/provider relations, in terms of providers’ responsibilities to users. Research into surveillance, identity, privacy, user exploitation and governance demonstrates difficulties SNS users wishing to protect themselves face (Bulgercu 2010, Dillon 2010, Ewbank et al 2010, Kuzma 2011, Mander-Huit 2010, Shoemaker 2010, Van Dijk 2010). These arise from providers’ apparent lack of care for users’ interests, as in practices like data mining, data disclosure to third parties and lack of transparency over alterations in contracts and privacy settings (Light and McGrath 2010, Light et al 2008, Parrish 2010, Xu et al 2010, Zimmer 2010). These may be exacerbated by unanticipated uses and users of SNS, such as the novel ethicolegal issues over privacy and employer/employee relations emerging as institutions like government agencies and commercial firms increasingly deploy SNS for public relations purposes (Kich-heart and Prion 2010, Powell 2011, Vinson 2010). Furthermore, SNS scholars have demonstrated that norms and values embedded in information technologies, applications and practices mean that information technologies cannot be accepted as mere tools or as morally neutral. Applying their approach of disclosive computer ethics to Facebook, Light and colleagues demonstrate how, in this context, ethicolegal responsibilities may alter over time and are complex, diffuse and difficult to assign to specific parties (Light and McGrath 2010, Light et al 2008). Others provide supporting evidence of users’ vulnerability to characteristics of the technologies themselves, which impact on their own and others behaviour. These include the online disinhibition effect (Suler 2004), deindividuation or depersonalisation of others so that normal codes of conduct are suspended (Chen et al 2009), the privacy paradox, where SNS users disclose more personal information than they say they intend to (Holland 2010) and optimistic biases driving underestimations of the likelihood of harmful consequences of their online practices (Cho et al 2010). Such characteristics of human-computer interface, embedded
in the technologies themselves, affect users’ decision-making, raising specific ethicolegal concerns over responsibilities and liabilities between parties. We provide a critical ethicolegal review of SNS use from a different and original perspective. Rather than a focus on changes in SNS technology or changes in who uses it and for what, we consider outcomes when individual users change. One of the moral norms embedded in technologies like SNS sites is an assumption that users will possess full and ongoing decision-making capacity. Yet SNS users with diminishing or compromised decision-making capacity are increasingly common, and likely to become more so. This raises specific and crucial ethicolegal issues. Although for reasons of space we discuss these only in relation to the legal framework applicable in England and Wales, our research has wider implications as other jurisdictions contain comparable legal infrastructure. SNS users’ lack of legal competence, or declining decision-making capacity, impacts upon ethicolegal responsibilities and duties of care of users, family/carers, service providers, technology suppliers, policymakers and regulators. While we focus on dementia to illustrate this, increasing proportions of the population who are SNS users will develop or currently possess neurodegenerative conditions, traumatic brain injuries, learning disabilities and other conditions affecting their capacity to make autonomous or prudent decisions. Indeed, ageing alone often involves changes in decision-making practices, like alterations in risk preferences (Nielson and Mather 2011). Many or most of those with impaired or declining decision-making capacity will experience disinhibition, impulsiveness, mood changes, loss of empathy, disregard for accepted social norms of interpersonal behaviour and fiscal irresponsibility (Mackenzie and Sakel 2010, Mackenzie and Watts 2011a, 2011b). All compromise the ability to exercise autonomy and prudence. Ideally, compromised decision-making capacity should not prevent those affected from obtaining health and social benefits from using SNS. Maintaining social contacts and personal identities via SNS undoubtedly enhances their health and well-being, while technologies enabling sharing family mementos like photos maintain emotional and extended family ties (Olivier and Wallace 2009, Tee et al 2009, Vallor 2011, Van House 2009). Membership of appropriate SNS can assist those with neurodegenerative conditions to maintain social participation (Williams et al 2010). Moreover, healthcare for those with chronic conditions will increasingly be delivered via E-health technologies (Mackenzie and
Sakel, 2011), including data transmission via SNS (Rothernpieler et al 2011), enabling users to avoid or postpone moves to care homes. Given that using SNS offers these users, their family/carers and the wider society significant benefits, the resolution of the ethicolegal issues we now describe is crucial. SNS and legal frameworks governing compromised decision-making capacity SNS like Facebook, Twitter and Friends Reunited are virtual spaces allowing people of all ages to communicate with one another, present their social relationships, upload personal and shared mementos like photos and maintain connections with others. SNS participation has grown dramatically recently and continues to do so (Bausch and Han 2011). Facebook reported over 500 million active users worldwide in January 2011 (Facebook 2011). Older people are the fastest growing demographic of users of SNS (Lewis and Ariyachandra 2011, Pfeil et al 2009), yet there is a paucity of research into the ethicolegal implications of this. Extant research tends to take psychomedical (Bickmore et al 2010) and technologically deterministic (Astell et al 2010) perspectives, rather than considering the ethicolegal implications of the use of technology by those whose decision-making capacity is likely to become impaired or compromised. We aim to redress this deficit by offering a critical review of SNS use by people whose decision-making capacities are compromised or declining, focusing on those with moderate to advanced dementia. Ethicolegal issues include capacity to give informed consent to contracts, especially as the rapidity of change to user agreements by social networking sites raises issues of data sharing and control (Press Complaints Commission 2011, 2009), the potential role of advance decisions and the implications of leaving a digital footprint, or evidence of online activity and connections, for someone who may have limited, or no, capacity to understand what is left behind. Difficulties surrounding decision-making capacity and its assessment underpin these ethicolegal concerns. Only those seen as legally competent, or as possessing decision-making capacity, have their decisions regarded by the law as autonomous choices which should incur legal responsibility and be free from interference. This means that if we as competent adults sign a contract, we are liable to fulfil its terms. Minors and others who have never attained legal competence are not recognised by the law as able to take autonomous charge of their lives in
this way. Instead, decisions may be made on their behalf by parents or legal guardians in their best interests. Decisions implementing the wishes of once competent persons may be made by proxy decision-makers with lasting powers of attorney (LPA) appointed by those persons when competent, guided by advance decisions, statements which document the person’s preferences in specific situations. Where advance decisions and/or proxy decision-makers have not been put in place by persons who subsequently lose competence, state appointed officials step in to manage the finances and property of the legally incompetent. In England and Wales, under s. 9 of the Mental Capacity Act 2005, LPAs may be created for dealings in property and financial affairs or for personal welfare decisions like day-to-day care and medical treatment. Most jurisdictions have similar provisions for decisions to be made on behalf of the incompetent and also rely upon similar elements in measures of decisionmaking capacity. Capacity is assessed in relation to a specific decision at a particular time, and incorporates four elements: the ability to understand the decision, to retain it, to weigh it in the balance to come to a decision and to communicate the decision (Mackenzie and Watts 2011a, 2011b). Legal infrastructures in place to determine capacity and delegate decisions regarding those who are unable to exercise full autonomous choice are put in place to embody states’ ethical obligations to citizens. In England and Wales, as with other common law jurisdictions, the Crown must protect vulnerable citizens under the prerogative parens patriae, making decisions in their best interests. Decision-making capacity is accepted as the threshold for deciding whether a person’s decisions will be respected as autonomous, or made by another on their behalf. Many ethical issues arise from this. Most notable in the context of SNS use by those with compromised or declining capacity are questions over the assessment of capacity, the nature of capacity, what course should be followed when it is lost or diminishing and the fact that as capacity is not synonymous with full autonomy, many people may have capacity to make day-to-day decisions but are nonetheless vulnerable in complex contexts, as when they are consumers. Current programs seeking to reform European data protection law seek to protect citizens who have the capacity to make autonomous decisions, but are nonetheless vulnerable in technologically complex environments like SNS (Europa 2011, Reding 2011). In this context there is an evident need to integrate states’ obligations to protect the vulnerable, legislation governing incapacity and data protection, SNS providers’ data management practices and contractual relations, healthcare technologies and SNS use involving the exchange of
images and data. Yet how to do so in an ethical fashion is far from straightforward. As the issues we have raised in this paper have not been considered together in this context, sustained transdisciplinary research into how they might be addressed is needed. Our paper represents a beginning in this emerging field. Accordingly, it would be premature to propose detailed solutions, rather than to suggest directions for further inquiry. One starting point would be how to balance ethicolegal responsibilities equitably. For instance, in England and Wales the Mental Capacity Act 2005 places an obligation upon those assessing capacity to take steps to enhance capacity, like ensuring that information is presented in a clear and appropriate fashion. Yet how far SNS providers should be obliged to assess users’ capacity and to enhance their capabilities is a complex issue, both ethically and legally. Similarly, there is no obligation to create LPAs in anticipation of compromised capacity, nor guidance on how to couch instructions over managing digital transactions, identities and footprints in LPAs. While family/carers have a duty of care towards vulnerable persons for whom they have assumed responsibilities, the ambit of this is uncertain and the responsibility of assessing capacity taxing (Biggs and Mackenzie 2006, Mackenzie and Sakel 2011, 2010). Fixing family/carers with responsibilities for managing the digital affairs of those with compromised or declining capacity would be inequitable unless adequate assistance to do so was readily available. Nonetheless, legal structures created to protect vulnerable citizens and their property must adapt if they are to do so effectively as SNS use and use of SNS to deliver healthcare becomes increasingly common. How this should take place for those with compromised decision-making capacity is highly challenging. Existing regulatory infrastructure in this area is problematic. Measures of legal competence have been criticised for testing only cognitive aspects of decision-making while ignoring emotional aspects, sequela of neurodegenerative conditions and neurodivergences (Mackenzie and Watts 2011a, 2011b, Mackenzie and Sakel 2010). Moreover, advance decisions recorded in LPAs raise difficult ethicolegal issues over when preferences expressed in one state of being should bind outcomes when there has been loss of competence. Incompetent persons may have understandably different priorities and wishes from those they had before, but may have these overridden by advance decisions. Situations involving illness or dependence seen as unendurable when one is healthy may prove to provide satisfactory quality of life after all once one has become accustomed to them: our ability to predict how we will feel in the future after such events is poor and usually underestimates our level of contentedness (Halpern and
Arnold 2008). We provide a series of case vignettes to illustrate these points in relation to dementia. Dementia, decisions and SNS: a series of case vignettes Dementia is a major cause of disability amongst older people. It constitutes one of the most serious challenges currently facing families and health services in the developed world. Over 800,000 people have dementia in the United Kingdom, a figure projected to rise to over 1.7 million by 2050; approximately 200,000 new cases of dementia are diagnosed each year (Alzheimer’s Society 2007). Dementia is an umbrella term used to describe a family of brain disorders that have in common a loss of cognitive function that is progressive and eventually severe. Over time the person with dementia’s ability to remember, understand, communicate, reason and use learned skill gradually declines; mood changes are also common particularly as the part of the brain that controls emotion is affected by the disease. People in the later stages of the illness also often wander. Although there are over 100 different types of dementia, the most common is Alzheimer’s disease and vascular dementia; Alzheimer’s disease accounts for more than 60% of the total. The risk of Alzheimer’s disease increases substantially with age; whereas only 5% of people aged over 65 have dementia, this figure rises to 25% of those aged 85 years and over (House of Commons 2008). Although the course of dementia is widely understood as taking place in a set of stages commensurate with symptom severity, there is in fact much individual variation in speed of deterioration and symptom intensity (Fortinsky 2008, National Institute for Health and Clinical Excellence 2007). Nearly two thirds of people with dementia live in the community and one third in care homes (Dening and Milne 2011). Currently there is no cure for dementia and despite increasing consensus that early identification of the condition is beneficial, it is difficult to accurately diagnose and challenging to communicate (Milne 2010, Milne et al 2005). Overall, it is estimated that of all those over 65 who develop late onset dementia, 370,283 (55.4%) have mild dementia, 214,638 (32.1%) have moderate dementia and 83,801 (12.5%) have severe dementia. It is also estimated that only approximately two thirds of all those with dementia are ever formally diagnosed (Banerjee and Wittenberg 2009). In order to explore the ethicolegal dimensions of this debate in an engaging way we will employ a case vignette. This is a constructed persona based on an amalgam of real life situations. Sue represents a
growing demographic in the United Kingdom who interacts regularly with SNS. Social networking use among internet users aged 50 and older nearly doubled—from 22% in April 2009 to 42% in May 2010 (Pew 2010). Case Vignette: Early Stage Dementia Sue is 65 years old and a retired teacher. As a modern grandma Sue uses the social networking site Facebook to keep in touch with her grandchildren in Australia. From time to time she posts photographs of herself and her husband Mike which her friends and family can see online. She is also keen to keep in touch with her school friends via Friends Reunited, a social networking site which allows school, college, university and other groups of people to keep connected. She is currently editing a year album and she has been asking friends to email her their school photographs. About a year ago Sue was diagnosed with early stage Alzheimer’s disease.
At this stage Sue has the capacity to give informed consent to decisions of all types and is able to understand her role editing the yearbook, controlling other people’s information and managing the privacy settings that she uses for the online group. Legally, Sue’s role in editing the album with her friends’ school photographs makes her liable as a data controller under the European Data Protection Directive 95/46/EC, despite the directive’s not being intended to apply to private individuals’ use of SNS (Wong 2009). She is actively able to ‘curate’ and manage her ‘online self’ through the use of personal and supported narrative, e.g. stories of past events, shared memories, photos (Crichton and Koch 2007) and she is also able to reinforce her identity through SNS relationships and links. She can read and understand user agreements for various sites and is able to shop online and maintain control of what has been described as her active digital footprint, or her personal data made accessible online through her deliberate posting or sharing of information (Grayson 2011). Although treatment for dementia is very limited, Sue is able to engage in discussions with her GP and husband about whether she wants to be part of a trial to test a new drug and/or whether she wants to be prescribed a cholinesterase inhibitor to improve her memory and reduce anxiety. She tries galantamine, but, like 20% of those who try it (Wilcock et al 2000), she feels sick and isn’t sure it alleviated her symptoms, so she stops
taking it. As Sue is able to give informed consent to treatment at this stage and to consider the consequences of her decisions, she would pass clinical and legal criteria in most jurisdictions for having sufficient mental capacity to make informed decisions about her own welfare and wellbeing (Mackenzie and Watts 2011a, 2011b). Case Vignette: Moderate Stage Dementia Over the next year, Sue begins to show signs of cognitive deterioration. Her memory becomes less reliable, she finds it more difficult to remember passwords and events and her role as the editor of Friends Reunited yearbook becomes untenable. She is no longer able to act as a data controller for other people and she finds it increasingly difficult to understand technical jargon. She is beginning to rely on her husband to manage her active digital footprint, her online banking and shopping and her SNS privacy settings. Nonetheless, she maintains her Facebook page to retain contact with her family and friends online. They post pictures and stories which help her to remember past events and to remind her of future ones. Towards the end of this period Sue’s lawyer suggests that she appoints someone with Lasting Power of Attorney (LPA) to make decisions on her behalf should she lose decision-making capacity about her healthcare, personal welfare and property interests, and that she creates an advanced directive (or living will), outlining her wishes should her dementia worsen. Sue does so, appointing Mike with LPAs to make decisions over her property and financial affairs and personal welfare and treatment decisions.
At this moderate stage Sue is beginning to need help to access and manage her activities including SNS. This raises a number of issues around control and sharing of personal data and who may be acting ‘on behalf’ of Sue as advocates or carers. As with banks, most SNSs require that passwords are kept secret and that the specified registered user does not permit others to use the site under his/her name. While the LPA for property and financial affairs takes effect once it is registered, so that Mike can take these kinds of decisions for Sue regardless of her competence, the LPA for personal welfare applies only if Sue lacks capacity to make the decision in question at that specific time and there have been sustained efforts to ascertain her wishes as well as to enhance her capacity (Bartlett 2008). Moreover, whether the range of a personal care and medical treatment LPA covers, or should cover, SNS activities is uncertain. The list of activities covered in the non-exhaustive and illustrative list in the Code of Practice (paras 7.21-7.25) alludes to place
of residence, day to day care, contact with specific persons, social activities and personal correspondence. Even if this were to be interpreted as including SNS activities, and Sue were to be seen as incompetent to do so, should Mike start to help her access SNS by keying in her passwords or login details his position is potentially difficult. Although it can be argued that this is supportive of Sue, by helping her maintain her usual online activities, the compromised security of shared passwords and the use of personal details raises issues over online identity and privacy of information shared by others (such as the content of e-mail, private postings on social networks and so on).
Case Vignette: Late Stage Dementia Nine months later Sue’s behaviour deteriorates significantly. She regularly experiences hallucinations and becomes very disinhibited. She starts to leave the house when Mike is out and wander down a busy road near their house. She also starts to accuse Mike of acts of abuse and on occasions is verbally aggressive to family and friends who visit. She is no longer able to use online banking but, given a lot of help, can still shop for her favourite foods and clothes online. In fact Mike has closed their joint bank account as he is concerned she may be giving money away to strangers or even family members without his permission. If any changes to the interface settings or the software she has been using are made, she becomes very confused and irritated. Mike has full access to her passwords and codes. She occasionally posts inappropriate messages about herself and others online but still gains much pleasure from viewing online pictures of her grandchildren and interacting with her daughter and friends abroad. She is only able to remain at home with the help of support from her husband, care services and a telemetric device used to monitor her behaviour and movement. Her use of SNS is now curtailed, largely by default rather than by design, and her independence is constrained. Should Sue move into a care home, as people with dementia do as the condition progresses, many similar ethicolegal issues over SNS use will arise (Milne 2011). At this stage of her illness serious questions arise over Sue’s competence to manage SNS and related online activities. Lack of legal guidance about who can support when and how to intervene is problematic. As he has LPA, Mike is able to make decisions on Sue’s behalf but cannot do so without knowledge of her passwords for access to online sites. Moreover, the extent and content of her digital footprint is largely unknown to him.
Sue’s capacity to grasp changes to settings or software is now so limited that without help she would be excluded from most online activities including SNS. As these give her much pleasure e.g. seeing photos, online shopping, it is desirable that she be supported in their use. As the materials may act as ‘scaffolding’ for conversations with Mike and others they are an important contribution to her personal life story and enhance her quality of life. There are additional concerns about health data online. Before turning to a broader discussion about the ethicolegal issues that SNS and people with advanced dementia raise, we will briefly outline the nature and functions of healthcare technology in relation to this population. Health Technology, Decision-Making Capacity and Dementia Technological support available to those with compromised decisionmaking capacity, including advanced dementia, includes telecare, telemetric monitoring of symptoms and location and assistive technologies. Though increasingly being used and supported by governments across Europe, many of the ethicolegal issues concerning telemetric devices are under-researched, particularly the additional demands they make on family/carers (Mackenzie and Sakel 2011). Easy location of people with dementia and ongoing care of others with neurological conditions is enabled by electronic tagging, GPS location, monitoring agents, on-the-body sensors, body area networks and virtual assistants (Castellot et al 2010, O’Neil et al 2011). Supporters of these devices argue that for people with compromised decision-making capacities and neurodegenerative conditions including dementia humane devices can extend community based living, enhance independence and quality of life, and reduce the need for more constraining interventions e.g. going to a day care centre or care home (Department of Health 2005, Dewbury and Linskill 2011, Schikof et al 2010). They are not incompatible with respect for privacy concerns (Rothernpieler et al 2011). Medical data gained from some of the devices may also be able to offer a more accurate day-to-day assessment of users’ health than those gained via complex and expensive clinic based assessment. Ideally, health technologies would take compromised decision-making capacities into account and seek to enhance these in living contexts. Intelligent assistive technologies in development seek to move beyond monitoring location and health data to applications which support compromised decision-making, augment memory and provide ongoing contextual customised assistance (Boger and Mihailidis 2011). It is this
kind of approach which we would like to see in relation to SNS technologies, provider orientation and legal regulation. It would enable users whose decision-making capacity is compromised or declining to continue to experience the benefits of using SNS while simultaneously protecting their interests and those of their family/carers. Discussion As can be seen through the lens of the case vignette a number of key issues are raised by the use of SNS by people with advanced dementia. Concerns about the need to (potentially) protect a person with advanced dementia from harm, e.g. wandering, are mirrored by equivalent concerns about the use of SNS by those with compromised decision-making capacity. The pavement is the equivalent of the web and their steps on the pavement are their digital footprint. Our review of published literature suggests that there is a paucity of published research about people with compromised or declining decision-making capacity and SNS, and in particular how ethicolegal issues related to diminishing capacity and consent intersect with disinhibition, online activity and rapid developments in tele-health and shared platforms. Although online activity is governed by national legal frameworks, the international nature of the internet presents significant challenges to systems of local jurisdiction (Goldsmith and Wu 2006). Furthermore, there is abundant legal uncertainty over SNS governance as different bodies of law are not compatible with each other. Regulation of data protection, privacy, informed consent to contractual obligations and medical treatment, loss of capacity and online conduct is disparate rather than integrated and international harmonisation of state laws is patchy. The rapid rise of SNS raises issues over the boundaries of private and public domains, how far existing models of ownership can be extended to information and images shared through SNS, how control over digital identity should be managed and if there should be a right to remove digital footprints, how this is to be instantiated. Liability for the role of data controller for others in an online context is a central concern. Existing legislation put in place to protect the interests of vulnerable people does not do so in this instance, but rather leaves users and family/carers such as those illustrated in our study in an uncertain position. This situation raises a number of multifaceted issues:
Digital footprints, data/images posted to SNS, ownership and responsibilities Viviane Reding, Vice-President of the European Community and Commissioner for Justice, Fundamental Rights and Citizenship, seeks to reform existing data protection legislation dating from 1995 to oblige businesses to build data protection and privacy by design into their online technologies, ensure consent to specific uses before users’ data is used, provide transparency over uses of users’ data and work towards international harmonisation of online governance (Europa 2011). She is a firm supporter of the right to be digitally forgotten, or to be able to have one’s digital footprint removed (Reding 2011). How this should apply to those with compromised decision-making capacities is uncertain, partly in relation to their ability to consent, the apparatus for decision-making on their behalf and the legal status of data and images posted on SNS. Current legal regulations of contractual liability where there has been loss of capacity does not protect users, family/carers and those with LPA in this context, nor provide them with legal certainty over liabilities. A central issue is the shared nature of private data or images posted by SNS users. Consent to use friends’ or family photos, for instance, is implied rather than explicit and initial users’ control over subsequent use once they have been uploaded is negligible, yet the initial user may still incur liability as a data controller. It is inherently problematic to expect individual consent procedures to govern shared, but private, information, like familial genetic makeup. Images and data concerning friends and family cannot be easily subjected to consent procedures by SNS providers. Moreover, laws governing the ownership of personal images and private information taken from intellectual property law are unlikely to prove helpful in this context. Current legal debate illustrates the complexity of whether online networks are forums for private communications or public arenas in which to publish information (Press Complaints Commission 2011a, 2011b). While further regulation over responsibilities of users, family carers, healthcare professionals and those with LPAs in relation to SNS use by those with compromised or declining capacities could be clarified, fundamental conceptual issues over dissemination of shared information and images online must be resolved if this is to succeed. Moreover, proposals for the removal of digital footprints must take these factors into account, particularly specific issues provoked by memory loss in dementia.
Loss of memory or decision-making capacity raises issues over how far a person who cannot recall what they have posted online can be held responsible for that material both now and in the future. Responsibility for online data rests (primarily) with the person who posted it but if a person lacks capacity this may be difficult to uphold. Those with compromised decision-making capacities or dementia may find difficulty in managing online data, may not be aware of the consequences of previous or current disinhibition in an online context, and who have little recall of that disinhibition, either in relation to themselves or others. Yet who may lawfully remove content uploaded by users who have lost or have declining capacity and under what circumstances is unclear. Users’ ability to direct others to their digital footprint in order to remove it will be compromised. Moreover, if much of it exists on others’ sites, what constitutes the digital footprint and the power to remove it is problematic. Furthermore, if the footprint is proving a valuable documentation of identity and preferences, it may be in users’ and their family/carers’ best interests to preserve it (Crichton and Koch 2007). Increasing use of SNS in e-health data transmission and devices that assess medical status raise further questions about how far the person with compromised decision-making capacity has been involved in decisions about the data capture and its use. They may give lawful consent to information being shared with healthcare professionals and third parties when their consent was obtained, yet if it is digitally collected and stored, how much, if any, influence they should have about its deletion or future use should perhaps be addressed within a personal welfare LPA. Cross-platform compatibility The interoperability of devices and cross-platform compatibility of data raises a linked concern about the ownership and control of data uploaded to one platform and viewed, changed and manipulated on another. Recent news reporting suggests that it is an issue we should all be worried about. Seemingly, some smart phones keep precise track of user’s location on a daily basis (Wakefield 2011). User agreements allow for this information to be stored, and in some circumstances shared without providers being obliged to notify the user. Further, pervasive design of devices and applications which operate on a cross platform basis, will inevitably affect the sharing of personal data of those with compromised or declining decision-making capacity and their family/carers.
There is recent evidence that compatibility between systems can give rise to blurring of functions. For example, a mobile telecare service by Telefonica, operating as a monitored medical call service, also has a recognised social function. “About 10% [of calls from elderly frail users] are related to some health issue, but only 6% are a real emergency”, however it is suggested that younger relatives “can even remotely upload family pictures and maybe a range of applications” (De Aroaz 2011). An important part of this service is the social contact between user and operator. It is clearly the younger relative in this scenario who is thought to be familiar with the digital technology. This raises important considerations for the human-computer interaction designers who are tasked with not only developing technology, but also making technology user-centred and user-friendly, where there is no single end user, with elderly frail people and family/carers spanning differing generations (De Aroaz 2011). Although scepticism has been expressed over this kind of division of different generations of users into younger ‘digital natives’ and older ‘digital immigrants’ (Bennett et al 2011), multi-functional digital technologies focused on improving the well-being and capacities of family/carers and the frail elderly have the potential to enhance the wisdom of all (Prensky 2009). Yet the potential for tele-monitoring devices to offer a social contact function must be balanced against concerns over privacy and confidentiality in relationship to health related data. There is increasing public concern that data intended for one purpose is being shared across a platform or network with a quite different function (Liu et al, 2011, Pallis et al 2011). The potential for confusion for those with compromised decision-making capacity in this context is considerable, while the legal implications of the sharing of personal health data a significant concern. For digital technology designers, the questions raised earlier are fundamentally those of ‘control’ over access and the need to establish individualised settings. Human-computer interaction designers are tasked with developing technology - be it SNS or tele-health care devices - that is both user-friendly and protects privacy. One of the most effective mechanisms for protecting privacy is to change personal details, e.g. login, passwords, and settings on a regular basis. This can be complex, time consuming and confusing: for those with compromised decision-making capacity, it simply not feasible. Moreover, the complexity of agreements necessary to allow fine levels of user control over online materials tends to exclude people with impaired capacity. Certainly agreements relating to the legitimate sharing of data across the boundaries of different platforms are very complex and frequently changing.
5
Conclusions
There is an urgent need to find an integrated ethicolegal framework which addresses the needs of those with compromised or declining decision-making capacity and their family/carers while protecting the past, current and future online activities in which they may engage. Legal uncertainties over obligations and liabilities place all parties involved in SNS use at unacceptable risk. Reforms are needed to specify duties of care, responsibilities and liabilities of all concerned. We would like to see these embody the spirit of the Mental Capacity Act 2005, where obligations are placed on those assessing capacity to enhance the participation of those whose decision-making capacity is in question in decisions which concern them while acting in the best interests of those who lack legal competence. Technology providers, regulators and family/carers must take into account the impact of technologies on users’ decisions, as in the disinhibition effect, deindividuation, the privacy paradox and optimistic bias, along with the impact of characteristics accompanying compromised or declining capacity like disinhibition. Responsibility for assessing decision-making capacity of SNS users should be shared equitably among the parties. The ability to understand user agreements and their ongoing changes is a core concern for protecting those with declining decision-making capacity and potential advancing memory loss. The rapidity of change in the SNS uses, together with the almost daily developments in applications and hardware engineering create a changing and variable landscape, increasingly difficult to navigate for those with compromised decisionmaking capacity and their family/carers. Though delegated decisionmaking through LPA provides potential scope for control of activities online, issues of online identity management, data protection, removal of digital footprints and resolution of conceptual difficulties over the ownership and control of shared private information and images demand accompanying changes in other areas of the law. Ethicolegal consideration of issues arising in SNS decision-making and design is crucial as the legal frameworks governing capacity based decision-making and data monitoring do not fit together well. Lack of compatibility between differing areas of law causes concern in relation to potentially problematic consequences of rapid developments in digital technology and its use, for both medical care and SNS activities for people with compromised decision-making capacity. International harmonisation is essential (Europa 2011, Kuner et al 2011, Reding 2011,
Schwartz 2011). These issues intersect with those relating to healthcare monitoring/assistive technology devices, raising questions of human rights and civil liberties beyond the scope of this paper. While we review this landscape through the lens of the current legal framework in England and Wales, and how this impacts upon SNS use by people with compromised decision-making capacity and their family/carers, questions raised have implications outside this jurisdiction and beyond any population deemed to be ‘vulnerable’ or ‘at risk’; they concern us all.
References Alzheimer’s Society, 2000. Dementia UK. Alzheimer’s Society, London. Astell, A.J., Ellis, M.P., Bernardi, L., Alm, N., Dye, R., Gowans, G., Campbell, J., 2010. Using touch screen computer to support relationships between people with dementia and caregivers. Interacting with Computers, 22, 267-275. Banerjee, S., Wittenberg, R., 2009. Clinical and cost effectiveness of services for early diagnosis and intervention in dementia. International Journal of Geriatric Psychiatry, 24, 748–754. Bartlett, P., 2008. The Mental Capacity Act 2005. 2d ed. Oxford University Press, Oxford. Bausch, S., Han, L., 2006. Social networking sites grow 47 percent, year over year, reaching 45 percent of web users: http://www.nielsennetratings.com/pr/pr_060511.pdf, 2006, accessed 18th May 2011. Bennett, S., Mahon, K., Kervin, L., 2008. A digital natives debate: a critical review of the evidence. British Journal of Educational Technology, 39, 775-786. Bickmore, T., Puskar, K., Schlenk, E.A., Pfeifer, L.M., Sereika, S.M., 2010. Maintaining reality: Relational agents for antipsychotic medication adherence, Interacting with Computers, 22, 2010, 276-288. Biggs, H., Mackenzie, R., 2006. End of life decision making, policy and the criminal justice system: untrained carers assuming responsibility (UCARes) and their uncertain legal liabilities’ 2 (2006), Genomics, Society and Policy, 118-128. Boger, J., Mihailidis, A., 2011. The future of intelligent assistive technologies for cognition: devices under development to support independent living and ageing with choice. Neurorehabilitation 28, 271280. Bulgercu, B., 2010. Antecedents and outcomes of information privacy concerns in online social networking: a theoretical perspective. Sprouts Working Papers on Information Systems 10-81, 1-35.
Castellot, L.R., Giuliano, A., Mulvenna, M.D., 2010. State of the Art in Electronic Assistive Technologies for People with Dementia, Springer, London. Chen, V.H., Duh, H.B., Ng, C.W., 2009. Players who play to make others cry: the effects of anonymity and immersion. ACE ’09 Proceedings of the International Conference on Advances in Entertainment Technology, doi 10.1145/1690388.1690454. Cho, H., Lee, J-S., Chung, S., 2010. Optimistic bias about online privacy risks: testing the moderating effects of perceived controllability and prior experience. Computers in Human Behavior, 28, 987-995. Crichton, J., Koch, T., 2007. Living with Dementia: Curating selfidentity. Dementia, 6, 365. De Aroaz, A.F., 2011. Telefónica launches electronic health venture as nations squeeze spending on medical care - Interview:Alvaro Fernadez de Araoz of Telefonica: http://www.globaltelecomsbusiness.com/Article/2634289/sectors/25198/i nterviewIvaro-Fernndez-de-Araoz-of-Telefnica.html, accessed 20th April 2011. Dening, T., Milne, A. (Eds.), 2011. Mental Health and Care Homes, Oxford University Press, Oxford. Department of Health, 2005. Building Telecare in England, The Stationery Office, London. Dewsbury, G., Linskill, J., 2011. Smart home technology for safety and functional independence: the UK experience. Neurorehabilitation 28, 249-260. Dillon, R.S., 2010. Respect for persons, identity and information technology. Ethics and Information Technology, 12, 17-28. Europa, 2011. Europa press release: Viviane Reding, vice president of the European Commission, European Commission Justice Minister: the reform of the EU data protection directive: the impact on businesses, European Business Summit, Brussels, 18 May 2011. Speech 11/349, http://europa.eu, accessed 20 June 2011.
Ewbank, A.D., Kay, A.G., Foulger, T.S., Carter, H.L., 2010. Conceptualising codes of conduct in social networking communities, in: Dasgupta, S. (ed.) Social Computing: Concepts, Methodologies, Tools and Applications. George Washington University, Washington, D.C., pp. 2096-2112. Facebook: http://www.facebook.com/press/info.php?statistics, accessed 19th May 2011. Fortinsky, R.H., 2008. Diagnosis and early support, in: M. Downs and B. Bowers, (Eds.), Excellence in Dementia Care: Research into Practice, Open University Press, Maidenhead. pp. 265–284. J. Goldsmith, J., Wu, T., 2006. Who Controls the Internet? Illusions of a Borderless World. Oxford University Press, Oxford. Grayson, R., 2011. Managing Your Digital Footprint. Rosen, New York. Halpern, J., Arnold, R.M., 2008. Affective forecasting: an unrecognised challenge to making serious health decisions, Society of General Internal Medicine 23, 1708-1712. Hart, J., 2010. Criminal infiltration of financial institutions, Journal of Money Laundering Control, 13, 55-65. Holland, H.B., 2010. Symposium: internet expression in the 21st century: where technology and law collide: privacy paradox 2.0. Widener Law Journal, 19, 893-954. House of Commons Committee of Public Accounts, Improving services and support for people with dementia, HC 228, The Stationary Office, 2008. Kich-Heartt, E.I., Prion, S., 2010. Social networking and HIPAA: ethical concerns for nurses. Nurse Leader 8, 56-58. Kuner, C., Cate, F.H., Millard, C., Svantesson, D.J.B., 2011. Moving forward together, International Data Privacy Law, 1, 81-82. Kuzma, J., 2011. Empirical study of privacy issues among social networking sites Journal of International Commercial Law and Technology, 6, 74-85.
Lewis, S., Ariyachandra, T., 2011. Seniors and social networking. Journal of Information Systems 4, 4-18. Light, B., McGrath, K., 2010. Ethics and social networking: a disclosive analysis of Facebook. Information Technology and People, 23, 290-311. Light, B., McGrath, K., Griffiths, M., 2008. More than just friends? Facebook, disclosive ethics and the morality of technology. ICIS 2008 Proceedings, paper 193, http://aisel.aisnet.org/icis2008/193, accessed 21 June 2011. Liu, C., Huang, Y., Pan, Q. 2011. A study on technology architecture and serving approaches of electronic government system. Communications on Computer and Information Science, 114, 112-117. Mackenzie, R., Sakel, M., 2011. Teleneurology: ethics of devolving responsibilities from clinicians to families and/or carers. British Journal of Neuroscience Nursing, 7, 429-432. Mackenzie, R.,. Sakel, M., 2010. The neuroscience of cruelty as brain damage: legal framings of capacity and ethical issues in the neurorehabilitation of motor neurone disease and behavioural variant frontotemporal dementia, in: M. Freeman, (Ed.), Law and Neuroscience. Oxford University Press, Oxford, 2010, 283-307. Mackenzie, R., Watts, J., 2011. Including emotionality in tests of competence: how does neurodiversity affect measures of free will and agency in relation to medical decision-making? American Journal of Bioethics Neuroscience, 2, 27-36. Mackenzie, R., Watts, J., 2011. Can clinicians and carers make valid decisions about others’ decision-making capacities unless tests of decision-making competence and capacity include emotionality and neurodiversity? Tizard Learning Disability Review, 16, 30-37. Manders-Huits, N., 2010. Practical versus moral identities: identity management. Ethics and Information Technology, 12, 43-55. Milne, A (2011) Living with Dementia in a Care Home: Capturing the Experiences of Residents, Quality in Ageing and Older Adults Special Issue, Dementia Care: a positive future, 12(2), 76-85.
Milne, A., 2010. The D word: Reflections on the Relationship between Stigma and Dementia, Journal of Mental Health, 19, 227-233. Milne, A., Hamilton-West, K., Hatzidimitriadou, E., 2005. GP Attitudes to Early Diagnosis of Dementia: Evidence of Improvement, Aging and Mental Health, 9, 449-455. Mitchell, K.J., Finkelhor, D., Jones, L.M., Wolak, J., 2010. Use of social network sites in online sex crimes against minors Journal of Adolescent Health 47, 183-190. National Institute for Health and Clinical Excellence and Social Care Institute for Excellence, Guidelines on supporting people with dementia and their carers. British Psychological Society and the Royal College of Psychiatrists, London, 2007. Nielsen, L., Mather, M., 2011. Emerging perspectives in social neuroscience and neuroeconomics of aging. SCAN 6, 149-164. Olivier, P., Wallace, J., 2009. Digital technologies and the emotional family. International Journal of Human-Computer Studies 67, 204-214. O’Neil, M., Freeman, M., Christensen, V., Telerant, A., Addleman, A., Kansagagtara, D., 2011. Non-pharmacological Interventions for Behavioral Symptoms of Dementia: a Systematic Review of the Evidence. VA-ESP Project #05-225, US Health Service research and Development Services, Washington DC. Pallis, G., Zeinelpour-Yatzi, D., Dikaikos, M.D., 2011. Online social netwoks: staus and trends. Studies in Computational Intelligence, 231, 213-234. Parrish, J., 2010. PAPA knows best: principles for the ethical sharing of information on social networking sites. Ethics and Information Technology, 12, 197-193. Patchin, J.W., Hinduja, S., 2010. Trends in online social networking New Media in Society 12, 197-216. Pew Internet report: Older Adults and Social Media August 2010: http://www.pewinternet.org/Reports/2010/Older-Adults-and-SocialMedia.aspx, accessed 22nd April 2011.
Pfeil, U., Arjan, R., Zaphiris, P., 2009. Age differences in online social networking – A study of user profiles and the social capital divide among teenagers and older users in MySpace. Computers in Human Behavior, 25, 643–654. Powell, C.D., 2011. You already have zero privacy. Get over it! What would Warren and Brandeis argue for privacy for social networking? Pace L Rev 31, 146-181. Prensky, M., 2009. H. sapiens digital: from digital natives and digital immigrants to digital wisdom. Innovate Journal of Online Education, 5, 697-705. Press Complaints Commission, 2011. PCC Chairman addresses Westminster Media Forum on Regulating Privacy and Online Media. http//www.pcc.org.uk/news/index.html?article=NzAwNQ, accessed March 2011. Press Complaints Commission, 2009. Privacy in the age of social networking, http://www.pcc.org.uk/news/newsletter/december/ privacyandsocialnetworking, accessed March 2011. Reding, V., 2011. The upcoming data protection reform for the European Union International Data Privacy Law, 1, 3-5. Reilly, P., 2011. ‘Antisocial’ networking in Northern Ireland: policy responses to young peoples’ use of social media for organising antisocial behaviour, Policy and Internet 10, DOI 10.2202/1944-2866.1071. Rothernpieler, P., Becker, C., Fischer, C., 2011. Privacy concerns in a remote monitoring and social networking platform for assisted living IFIP Advances in Information and Communication Technology, 352, 219-230. Schikof, Y., Mulder, I., Choenni, S., 2010. Who will watch (over) me? Humane monitoring in dementia care. International Journal of HumanComputer Studies 68, 410-422. Schwartz, A., 2011. Identity management and privacy: a rare opportunity to get it right. Communications of the ACM 54, 22-24. Shoemaker, D., 2010. Self-exposure and exposure of the self: informational provacy and the presentation of identity. Ethics and Information Technology 12, 3-15.
Suler, J., 2004. The online disinhibition effect. Cyberpsychology and Behavior 7, 321-326. Turk, J., 2011. Computer literacy as life skills for a Web 2.0 world. SIGCSE 11, 417-422. Van Dijk, N., 2010. Property, privacy and personhood in a world of ambient intelligence. Ethics and Information Technology 12, 57-69. Vinson, K.E., 2010. The Blurred Boundaries of Social Networking in the Legal Field: Just “Face” It: Research Paper 10-37. Suffolk Law School, Boston, MA. Wakefield, J. How safe is your smartphone? BBC News 15 March 2011. http://www.bbc.co.uk/news/technology-12710763, accessed 20 June 2011. G.K. Wilcock, S. Lilienfeld, E. Gaens, E., Efficacy and safety of galantamine in patients with mild to moderate Alzheimer’s disease: Multicentre randomised controlled trial. British Medical Journal, 321 (7274), 2000, 1445–1449. Williams, J., Wollf, A., Dryden, F., 2010. The higher you climb, the further you see! Aiming High for children with disability. Paediatrics and Child Health, 20, 327-330. Wong. R. 2009. Social networking: a conceptual analysis of a data controller, Jottels Communications Law 14, 142-149. Xu, H., Parks, R., Chu, C-H., Zhang, X., 2010. Information disclosure and online social networks: from the case of Facebook news feed controversy to a theoretical understanding. AMCIS 2010 Proceedings, Paper 503 http://aisel.aisnet,org/amcis2010/503. Zimmer, M., 2010. “But the data is already public”: on the ethics of research in Facebook. Ethics and Information Technology 12, 313-325. Zuk, N., 2011. Social media and the security risks they pose for business. BBC News 28 April, http://bbc.co.uk/news/business-13212528, accessed 21 June 2011.
