Contextual Consent: Ethical Mining of Social Media for Health Research Chris Norval Tristan Henderson School of Computer Science School of Computer Science University of St Andrews University of St Andrews St Andrews, Fife, UK St Andrews, Fife, UK [email protected] [email protected] ABSTRACT college students [24]. Such findings can help researchers and Social media are a rich source of insight for data mining and user- practitioners identify important markers in health and in society. centred research, but the question of consent arises when studying Despite these advantages, those who created the social data in such data without the express knowledge of the creator. Case question are not always informed about the process. While some studies that mine social data from users of online services such as researchers outline clear methods of obtaining informed consent Facebook and Twitter are becoming increasingly common. This when conducting research on social media data (e.g. [24]), only has led to calls for an open discussion into how researchers can around 5% of the literature that use such data describe their consent best use these vast resources to make innovative findings while still procedures [12]. respecting fundamental ethical principles. In this position paper Some have argued that social data posted online are freely we highlight some key considerations for this topic and argue that available for research [9]; however, others argue that just because the conditions of informed consent are often not being met, and personal information is made available online does not mean it that using social media data that some deem free to access and is appropriate to capture and analyse [2, 4, 11, 35]. Conway analyse may result in undesirable consequences, particularly within and O’Connor argue that the potential challenge to privacy the domain of health research and other sensitive topics. We posit occurs “not in the reading or accessing of individual materials that successful exploitation of online personal data, particularly (publicly available as they are), but rather in the processing and for health and other sensitive research, requires new and usable dissemination of those materials in a way unintended" [4]. methods of obtaining consent from the user. While it is important for such research using social media data to continue, the informed consent of all participants is an important milestone to strive for. Firstly, consent decisions are strongly tied Keywords to the expected audience [19, 22]. Research has suggested that ethics; privacy; health; consent; social media users have differing online behaviour based on their perceived audience, including more self-censorship [5, 32], and sharing 1. INTRODUCTION smaller proportions of both positive and negative emotions [3] Social media services, such as Facebook and Twitter, are a near when the perceived audience is more sparse, and less controlled. ubiquitous part of people’s lives. Facebook, for example, boasts Secondly, research into privacy settings on social media have over 1.7 billion monthly active users [7]. As a result we are suggested that most users may be significantly oversharing what increasingly sharing more and more data about our lives online: is intended [18, 20]. When analysing social media data online, data 68% of UK-based online adults look at social media sites or apps can be taken from individuals who are unaware that it is accessible, each week, 35% upload photos or videos, 28% share links to and privacy violations may be occurring. The likelihood of privacy websites or online articles, and 24% contribute comments to a violations increases with the number of people involved, with many website or blog [29]. such studies indiscriminately scraping the data of huge numbers of arXiv:1701.07765v1 [cs.HC] 26 Jan 2017 The vast quantities of personal data shared through such individuals [2], or not even reporting how they gather data [12]. platforms can offer new insights into important areas of And finally, participants may find it intrusive to discover that research [2]. Academics from various fields have capitalised their data is used in a way which is outside the boundaries of what on these data, leading to the comprehension of complex social was originally expected [4, 19]. An example of this is Samaritans behaviours and trends in society. Within a health context Radar, a well-intentioned Twitter app designed to monitor the alone, such social data has been found to act as a predictor tweets of the user’s contacts for potentially suicidal messages [16]. for depression [25, 30], suicide risk factors [6, 13], mood This app received criticism from the Twitter community over changes [15], flu outbreaks [17] and problem drinking in US privacy concerns, and was shut down days after launching. Therefore, with all previous points considered, participants may be sharing more sensitive and emotional content with a far wider audience than intended, they may not have otherwise provided consent for their data to be studied, and would likely find a violation of this to be intrusive. This suggests a disconnect between the researcher and the participant; a situation in which the autonomy of the participant should be respected. Safer and more explicit methods of consent are therefore necessary to best protect the needs of potential participants, while ensuring that we can make the best use of the vast quantities of social media data for health research. needed to meet the ethical and legal requirements for consent while In this paper, we take the position that new forms of obtaining accomodating the dynamic nature of modern research [14]. meaningful consent are necessary for successful online health Some of these concerns have been echoed by Morrison et research. We outline current methods of obtaining consent, discuss al., who found that few participants were aware of participating new potential methods that seek to mitigate these problems, and in an academic trial, as specified in the Terms and Conditions outline some of the challenges that need to be overcome for such a document of a mobile application. Further means of informing method to be developed. users of researchers’ intentions to collect and analyse user data are necessary to behave in an ethical manner [26]. Such findings call into question the suitability of broad, one-off methods of collecting 2. BACKGROUND consent when dealing with online research. As Steinsbekk et Informed consent, a declaration that the participant understands al. articulate, at the core of the debate is “what it means to the consequences of participating in the study, is widely seen be ‘adequately informed’ and whether giving consent based on as fundamental to conducting research with human participants broader premises is valid or not" [34]. [21]. From the point of view of the researcher, it is seen as fulfilling ethical responsibilities with regards to the protection of 2.3 Dynamic consent data, privacy, and autonomy of the participant [26]. While there Researchers have investigated different mechanisms for coping appears to be broad agreement when it comes to interventional with the above issues, such as using dynamic consent [14, 27, research, the subject of whether informed consent is necessary in a 34]. Dynamic consent is a framework for allowing participants study of online communications is the subject of debate [9, 33]. As to grant access to their personal data to researchers in a way that a result, new models for consent have been proposed [11, 14]. they can control. For example, a participant may decide to revoke access to their data, or customise their opt-in/opt-out preferences 2.1 User attitudes and the need for consent for participating in research. Studies into user attitudes are often subject to selection bias, Kaye et al. argue that, for participants, some of the advantages given that participants have opted in and are therefore not of dynamic consent include the ability to easily consent to new necessarily representative of the wider population. Despite this, it projects, alter consent preferences in real time, find out how their is worth consulting the viewpoints of those who may be potentially data has been used, and to set preferences about how they are kept affected by such research, and how they approach the trade-off informed. Researchers are said to gain more engaged participants, between societal benefit and personal intrusion. Mikal et al. streamlined recruitment, improved public trust, and the knowledge investigated user attitudes toward the analysis of social media data that their research conforms to high legal standards [14]. for research, discovering “equivocal findings" in the literature [23]. While researchers have outlined the potential benefits of Mikal et al. asked participants about their expectations of dynamic consent, Steinsbekk et al. dispute these, arguing that privacy with regard to monitoring depression at the population a convincing case has not been made. Their criticisms of level, finding that most were accepting of it [23]. This was, dynamic consent include more frequent (and therefore more trivial) however, largely conditional on the analysis being conducted in requests for re-consent, and an increased risk of the relationship an aggregated and anonymised way, with no way of targeting a between researcher and participant breaking down due to unmet particular individual. This is echoed by Conway and O’Connor, expectations and a lack of reciprocity [34]. The authors argue who argue the need for