AUTHOR
Brent Mittelstadt , Ben Fairweather , Mark Shaw and Neil McBride

ABSTRACT

This paper is the result of a research project at De Montfort University to identify the ethical impact of Personal Health Monitoring (PHM) systems on the healthcare relationships between patients and their doctors and payers within the United Kingdom. The project is complementary to two other European research projects, PHM-Ethics and ETICA, which focus on ethical issues of emerging technologies. The aforementioned research project complements these projects by taking a patient-centric focus.

Personal Health Monitoring (PHM) technologies are currently being developed to supplement traditional “brick and mortar” medical care with health monitoring outside the hospital. A primary factor spurring the development of PHM is the rapid aging of the global population which will increase the burdens placed on current healthcare systems, in many countries outstripping available medical resources. The purpose of this paper is to provide a review of the available literature discussing ethical issues relating to development and implementation of PHM technologies as present in the United Kingdom. Papers that only discuss development or implementation but lack a discussion of ethical issues are also included in the review in recognition of a general lack of scholarship dedicated to the ethics of PHM thus far.

A clear definition of “Personal Health Monitoring” does not exist in the current literature. For the purposes of the literature review a working definition was established–Personal Health Monitoring refers to any electronic device or system that monitors a health-related aspect of a person’s life on a constant basis outside of a hospital setting. Recently developed examples include GPS tracking devices used with mental health patients, blood pressure wrist monitors and ambient assisted living environments. It is predicted by the authors that the widespread implementation of PHM technologies will have some of the following effects:

1. An increased amount of accurate medical data will become available to some medical personnel.
2. Patients will have the tools and information to increase control over their own health through examination of personal medical data as well as recommendations and alerts provided by PHM technologies.
3. If doctors or paying organizations within the NHS are given access to PHM-derived data, the relationship between patients and these groups will change. As an example, if such data is used as a primary tool in diagnosis it may decrease the accuracy of diagnoses and alienate patients, as the chance exists for the account of the patient to be disvalued. Decontextualization of symptoms may take place if the patient’s account is ignored.
4. Medication and treatment recommendations can be monitored for compliance.
5. Patients will be in contact with medical equipment on a more regular basis.

Recognizing that “Personal Health Monitoring” is an emerging term not yet widely used in academia, complementary search terms were employed during database searches such as “personalized health,” “pervasive health,” “personal health,” “health surveillance,” “ambient assisted living,” and “smart homes.” Five databases were searched (PubMed, Scopus, IEEE, EBSCO, and CINAHL) from May 2010 to February 2011 to identify literature discussing the development, implementation and ethical issues relating to PHM technologies. Attention was given to the discussion of ethical issues (or lack there of) in each article, with the goal of reviewing the issues identified in the literature.

Ethical issues identified in the literature included problems of social integration and personal identify for “smart home” users, “medicalization” of the home environment, privacy concerns relating to data processing, patient and physical dependence on information technologies that may fail, lack of physical contact/examinations, and patient acceptance of new technologies. In some cases issues were identified through application of the Four Principles approach advocated by Beauchamp and Childress.

In general, ethical issues relating to development, implementation and data processing of PHM technologies were given little attention in the current literature. Although several issues were identified, none were given more than cursory treatment in the literature. As a result further research into these areas is both appropriate and necessary (preferably) prior to the widespread implementation of these technologies within the UK to ensure they are used in an equitable and beneficial manner. This work contributes to this need for scholarship by suggesting further ethical issues that may arise in the development, implementation and widespread use of PHM. Additionally, examples of PHM technologies are reviewed and common features are identified in an attempt to contribute to the development of a common definition of PHM. Although this is not the primary purpose of the paper, it is recognized that a common definition would be beneficial to the field. PHM technologies in development outside of the UK are also included in the review in recognition that such technologies may be used here in the future.

AUTHOR
Ananda Mitra

ABSTRACT

In the five year period starting in 2005, one of the most significant and visible application of the Internet has been the exponential growth of people who have enrolled themselves with networking sites to establish virtual connections with people they might know in real life. This has been described in popular culture as “social media” and has certainly attracted significant popular media attention. This paper examines the phenomenon within the theoretical contexts of discursive and narrative construction of reality where individuals are able to use a variety of representation tools – from text to video – to create a personal narrative. Previously it has been suggested that the discourse on social media sites can be labeled as “narbs,” an abbreviation for “narrative bits.” The narb becomes the building block for the identity narrative that is discursively produced and circulated amongst those who are “friends” of the individual. Since the number of friends could be very large in the case of virtual connections, and not all might be considered friends in the conventional meaning of the term, it is becoming increasingly important to be careful about the way in which narbs are produced and used. There is growing evidence that institutions ranging from universities to law enforcement agencies are using the narbs to gauge the identity of individuals. The identity narratives then become central in making attributions about an individual, and eventually decisions about the individual are based on the attributions which themselves need to be problematized with respect to authenticity, trustworthiness and agency. This paper offers a framework of considering the narb in a careful and systematic way where observers interested in making critical decisions about individuals are able to make appropriate judgments about narbs.

Much of the analysis that is used at this time to make the decisions about individuals relies on a specific narb. For instance, a waitress at a popular pizza restaurant was terminated from her job for a single narb that was posted by her. In some cases applicants for jobs have been eliminated from consideration because of a single narb that someone else had created about the individual. Instances such as these point towards a need to examine the narbs about an individual in a more systematic manner. This paper suggests an approach where the examination of the narbs take into consideration several issues. First, it is important to consider the volume of narbs and their frequency to gauge if there is sufficient information to base judgments and if the information is recent and regularly updated. Second, it is important to consider the author of a narb and see who the “agent” is. Third, it is important to consider the content of the narb with respect to the way in which it is constructed using which specific representational tools such as text, images, video, etc. Finally, it is important to explore if the narb actually provides any spatial information about the individual and allows for understanding how an individual moves through space. Most of these are components of any narb and provide an understanding of each narb in these terms as well as an understanding of the narrative that is produced by a set of narbs. The authenticity and trustworthiness of the narrative is then dependant on the relative value of these different components of the narb. For instance, it would be unwise to attach a great deal of value to the identity narrative if the majority of the narbs are produced by someone other than the individual.

This paper will also argue that among all the four different components of the narb, the issue of agency is perhaps the most important. It is quite possible that an individual would have numerous narbs on their social media Web site, but if the individual also has a large number of friends then the larger number of narbs could well be a function of the size of the network, whereas most of the narbs are actually authored by someone other than the individual. A simple example of this phenomenon is the abundance of birthday greetings that might populate the profile of an individual on the date of birth where all the narbs are indeed authored by others who might have a tenuous real connection with the individual. Because of the way in which the number of connections can grow exponentially and the others can influence the identity narrative produced by narbs, it is particularly important to examine the agency of narbs before coming to specific conclusions about the nature of an individual.

It is important to consider a systematic approach to the analysis of narbs not only for the benefit of institutions that might rely on narbs to understand their people better, but also to allow individuals some basic guidelines for managing their narbs. There is some popular literature that offer “tips” about who to be-friend and what to say on social media sites. However, much of these are a-theoretical and somewhat inconsistent. It is important at this juncture to consider developing a system where there is a clearer understanding of the way in which narbs are constructed as discourse, and thus can be de-constructed to unravel the ethical components of the discourse. The qualitative aspect of the analysis can be well grounded in discourse and narrative analysis, but I would suggest in this paper that it is important to consider a numeric analysis of narbs before embarking on a discourse analysis to create the identity narrative which might eventually remain unreliable because of the nature of the narbs used for the analysis. Understanding the different components of a narbs as suggested here could help avert the pitfall of mistaken attributions based on unreliable narbs.

AUTHOR
Richard Mills

ABSTRACT

Social News websites deploy voting systems whereby their community of users rank and sort large volumes of content collectively without explicit organisation or editorial control. The primary focus of this paper is the website reddit.com. On reddit, individual users can submit items of content (either links to web resources or text posts) and also vote (up or down) on the items submitted by other users. This voting system is also applied to comments on Posts. On any given day tens of thousands of users participate in content submission and voting; with the aggregate of this activity producing a ‘front page’ list of the 25 items which are seen by a large number of visitors to the website. Through the voting interface large numbers of users make a collective decision about which posts are displayed on the front page. Furthermore, each of these posts is accompanied by a democratically mediated discussion which is contributed to by thousands of individuals.

This paper will present research on reddit.com conducted using a variety of methods. As with any Social Media site reddit’s web servers contain precise and accurate records of all activity taking place on the website. Reddit’s administrators have provided one month of voting data from their servers for the purposes of research (henceforth ‘back-end’ data). This back-end data allows for questions relating to patterns of behaviour on the website to be addressed. However, back-end data has been anonymised with respect to post identity; making it unsuitable if we wish to consider qualities of the content being ranked. Reddit (again in common with many Social Media applications) provides an Application Programming Interface (API) which can be used to extract and store data. This paper will present details of the data extraction process, and offer examples of research questions which are more suited to back-end and front-end data respectively.

The interfaces deployed by Social News websites bear some similarity to those of Social Bookmarking websites. The major dissimilarity between Social News and Social Bookmarking is the degree to which Social News websites focus attention on the website’s front page; and absence of tagging on Social News sites.

This paper will present the following analyses related to back-end and front-end data obtained directly from the website.

• The hypothesis that Social News websites focus attention on their front page is supported by a Power Law (with exponential cut-off) distribution of votes between posts. This is seen as key to allowing a sense of website identity to emerge among its large user-base.
• The lifespan of a post is analysed in great detail, with results suggesting that early voting (within the first hour) is a strong predictor of the post’s ultimate success of failure.
• The relative attention received (in terms of votes and also hits) by posts in different areas of the website is analysed; suggesting that the front page is indeed where most of reddit users’ attention is focused.
• Patterns of User behaviour are studied; and it is revealed that people use their functionally identical accounts to participate in diverse ways.
• Several strategies are also identified whereby users seek to maximise the impact of their votes in determining what the front page will look like.

Content analysis has also been employed in an effort to understand what the broader significance of reddit is with respect to public discourse on the Internet. The background to this is the literature about public discourse on the Internet (e.g. Benkler, 2006; Negroponte, 1995, Sunstein, 2002; Noam, 2003). Case studies are being conducted on reddit’s coverage of the Wikileaks diplomatic cables (November/December 2010) and the current Egyptian protests. The primary aim of these case studies is firstly to determine how coverage of the stories on reddit differs from that of conventional news outlets. Preliminary results suggest that many posts on reddit link to conventional news outlets, with these articles being discussed through the commenting system. There are however also posts which speak to aspects of the story not covered by conventional news outlets; and text posts by users which espouse particular points of view; ask questions of the community; or which call on reddit users/visitors to engage in some form of collective action related to the ongoing story. A large proportion of posts about these subjects address the conventional news’ coverage of the story directly; often these are highly critical. This suggests that Social News websites may be of particular importance to issues surrounding the convergence of old and new media (Jenkins, 2006).

The method employed in these case studies involves looking at the profile of submissions on the topic, and comparing this to the voting reception each submission receives. A secondary aim of these case studies is to establish whether reddit’s voting interface is capable of expressing conflicting points of view; for example if I see a pro-wikileaks post on the front page does this mean I am unlikely to also see an anti-wikileaks post appearing here? What proportion of posts about the subject are for or against the topic, and is this proportion reflected in the number of posts of each persuasion that reach the front page? These questions relate to issues of fragmentation and polarisation of public discourse on the Internet (e.g. Negroponte, 1995).

Finally, this paper will present the results of an ongoing experiment which looks at how well reddit’s voting interface performs on the task of sorting large volumes of content such that the ‘best’ content (as judged by reddit users) has the highest rank and will be seen by the most people. This experiment also looks at whether an item’s voting response on reddit effects reddit users’ perception of the content; and if so how quickly this relationship is learned/un-learned.

REFERENCES

Y. Benkler. The Wealth of Networks: How Social Production Transforms Markets and Freedom. Yale University Press, New Haven, 2006.

AUTHOR
Craig McDonald

ABSTRACT

This paper examines the relationship between the concepts of ethics and of quality in the context of computer-based information systems. It argues that the relationship between the concepts is useful in that quality provides a concrete, accepted means for embedding ethics in professional practice and ethics provides a theoretical underpinning for quality and a means for its critique. The paper proceeds by briefly reviewing the concept of ethics and more extensively examines quality. It then teases out the relationship between the concepts and gives examples of the utility of that relationship in professional practice.

QUALITY: The term quality is used to express an assessment of the overall value of an object or activity. One account of quality considers the subjective experience people have of an object or activity. This experience might be might be described in answers to questions like “how do you rate the quality of this wine?”. Answers to such questions are, however, more descriptive of the state of the answerer than of the wine. An alternate account of quality is said to be objective. An expert, for example, might justify their assessment of a wine by referring to its particular properties – its colour, acid and balance – describing them as only wine experts can. But a description of properties is not a quality assessment. Quality is not a measure of some property of an object in the sense that 14% is a measure of alcohol content or slightly cloudy is a measure of wine clarity. Quality cannot be found by inspection. Quality, as an objective matter, is a construct which has an agreed meaning for a community and which allows the values of natural properties to be combined to yield an assessment of quality. The community decides what properties will be considered, what types of measurement will be made, what values will be placed on them and how they will be combined to produce an objective evaluation.

The above two accounts of quality distinguish between an objective, technical, community sense of the word and its subjective, experiential, individual sense. Quality is a strong, value-laden word; it is not always easy to separate the accounts in practice. Debate about the quality of a particular wine for example can easily shift back and forward between the two senses, confounding both.

Quality Criteria: If we accept that quality is not inherent in an activity or artefact but is a concept to be derived from attributes that are inherent, then we need to consider and specify what it is that will count as quality in any particular artefact or activity. Rather than considering each individual situation from scratch there are some general, overlapping quality ideas that can be brought to bear including context awareness, evidence-based action, fitness for use, stakeholder impacts and traceability (for accountability). Notice that many criteria relate to the impact of an artefact or activity of those it affects.

ETHICS: There seems to be three main kinds of discussion about ethics and ICT. The first tackles particular issues, like workplace surveillance or copying software, and examines the ethical principles that might apply to them. Laws are framed from this kind of discussion so it is critically important. The second looks at specific events that reveal unusual ethical aspects and dilemmas. The final kind of ethics and ICT discussion starts from first principles and sees issues and events as applications of ethical principle. This approach has given us a valuable practical tool for ethical evaluation – stakeholder analysis (Pouloudi 2000, Bowern et.al. 2004)

RELATIONSHIP BETWEEN QUALITY AND ETHICS: So, it seems that the affects of our systems on our stakeholders is a core idea behind both Ethics and Quality. Systems developers are at the sharp end of these issues because their work has significant and wide-spread impacts on others. In quality assuring systems are we not applying ethics?

Professional Ethics: Bittner & Hornecker (2002) argue that to have responsibility for an action (or not taking an action) in some situation, a person needs to have an element of voluntariness, autonomy, foresight and there needs to be a causal influence between the action and the effect. But complex organisations & large systems diffuse and disguise responsibility. Perhaps quality assurance is a means to address the complexity issue.

A USEFUL RELATIONSHIP: The reason the relationship between ethics and quality is described as useful is twofold. Firstly it has been found that ethics, as a way of thinking, is poorly embedded in professional computing practice and in education for professional practice (Lucas & Mason, 2008). So quality provides a means for the practical expression of ethics in systems development and its embedding in systems artifacts in a way that is meaningful to practitioners, measurable in practice and tangible in discussion.

The second useful aspect of the relationship is that ethics provides a rationale and a justification for quality, its specification and its assurance.

EXAMPLES OF THE RELATIONSHIP: The interaction of quality and ethics will be elaborated in an example from Software Engineering and another from Higher Education.

AUTHOR
Roger William Masters

ABSTRACT

Denial of Service ( DOS attacks) are described by Yar (2006) as attacks on a network com-puter or computers that disrupt normal operations to such an extent that legitimate users can no longer access their services. Whilst there have been many technical papers written by computer scientists in order to try and combat DOS attacks, there have been few crimi-nological studies on this subject. This study sets out to detail the history of DOS attacks around the world. It provides an examination of the underlying reasons that such attacks have been carried out and examines the extent to which the forces of law and order have been successful in containing the threats and prosecuting the offenders.

In the UK, Internet usage has grown over the last 10 years at an extraordinary rate to the point where in 2010 60% of the UK adult population accessed the Internet every day or al-most every day. This is nearly double the estimate of 16.5 million in 2006. Partly fuelled by the relatively low start up costs of e – business web sites, and massive investment by the banking industry in secure e- payment facilities, the amount of trade and business conduct-ed electronically has increased in line with this growth in Internet usage by the population at large. The number of adults in the UK who bought or ordered goods or services online within the last 12 months reached 31 million in 2010 (Office for National statistics 2010). Similar growth rates are being seen in many developed countries around the world. Busi-nesses are becoming increasingly reliant on the internet as a source of turnover and income, and, as a result, continuous internet availability is now an integral criterion for business success

Outside the world of commerce, governments, the forces of law and order, NGOs, higher educational institutions and many other non commercial organisations are also becoming increasingly reliant on the availability of the Internet. Any disruption to internet services whereby legitimate users are unable to access an organisation’s web site is therefore poten-tially disruptive, costly and could have significant ramifications both economically and repu-tationally.

Denial of service (DOS) or Distributed Denial of Service (DDOS) attacks set out to achieve just this. DOS attacks on the private and public sectors are now common, and attacks have been used for a variety of criminal purposes. DOS attacks are not new, but remain difficult to combat. The first recorded large scale attack was in August 1999 on a network used by students and staff at the University of Minnesota, resulting in the network being shut down for more than two days. In 2000, sites at Yahoo, Buy.com, CNN, Amazon and EBay were all affected by these attacks. In 2001 and 2002 Microsoft’s servers were disabled. A Russian crime gang used a DOS attack in an extortion attempt on UK gambling websites during the 2004 Grand National. In recent times, DOS attacks have been used to show ‘political’ sup-port for WikiLeaks and have been aimed at Master Card, Visa, Post Finance (a Swiss bank), Sarah Palin’s web site, and the Swedish Government. Other unrelated attacks have been launched against institutions as diverse as The Church of Scientology, and the web site of the U.K. Intellectual Property Office. In some cases, companies have allegedly paid the criminals a ransom to reveal how they brought the systems down, because from the corporate perspective it can cost less to pay the criminals than suffer the consequences of a DOS at-tack. Many companies have paid ransoms, and many have apparently suffered DOS attacks but not formally reported them to the authorities for fear of adverse publicity.

Those who seek to attack computerised systems in this way can be driven by a wide range of motives from a belief in freedom of access to information for all, to those who wish to perpetrate acts of vandalism, incapacitation, espionage or terrorism. Many of the recent high profile attacks have been in support of political and ideological goals. Government websites in both Tunisia and Egypt have been recently targeted by DOS attacks emanating from ‘hacktivists’ apparently in retaliation for censorship in both countries.

To date, relatively few arrests have been made around the world, and these have occurred primarily only in response to high profile cases. A 15 year old was amongst those recently arrested in the U.K. in connection with the WikiLeaks case, and the group claiming responsi-bility, Anonymous, is quoted as saying ‘You can easily arrest individuals, but you cannot ar-rest an ideology’.

Identifying, tracking down, arresting and successfully prosecuting those involved demands international police cooperation and a legal framework that facilitates successful conviction. In many cases it would seem that such conditions are far from being achieved. This paper sets out firstly to review the nature of the crimes committed and examines the impact of such attacks on organisations as well as the dynamics of both victims and offenders. It then focuses on the regulatory mechanisms developed to prevent such attacks and considers how the globalised international nature of the Internet has assisted or impaired such en-forcement. It concludes with an assessment of the effectiveness of the enforcement and criminal law systems in combating such attacks, both nationally and internationally.

AUTHOR
Emmanuel Martin

ABSTRACT

There can be many positive effects of social computing, and the use of so-called ‘social media’. For example, it can be used beyond socialising to seek advice and professional development as well as offering new business uses. It creates a collective intelligence across society through interactive collaboration across fast communication networks.” (Ethicomp 2011 Call for papers)

Beyond ”seeking new business uses”, social media is more and more used by companies to build professional communities. Connecting the employees to online social networks is supposed to help them share more information, more quickly and effectively, to tackle business issues. Members of these online communities can have the same job or, on the contrary, different jobs but a common professional concern. In this case, creating a social media (to help the employees interact) tends to mingle with interesting them to a common concern. Then what is the exact role of the media : a sheer instrument, or an embodiment of social relations ? Based on the account of an ongoing web 2.0 project inside a large energy company, this paper discusses the “positive effects of social computing” on two levels : does a web 2.0 device provide any benefit to an existing social network ? Does the implementation of such devices transform the way employees work together ? As a participant observer in this project, I provide ethnographic data on its development, using Latour & Callon’s “actor-network” theory to explain the making of a new collective actor (Latour, 1991 ; Callon, 1986).

Quality of Working Life is a corporate policy which has been developed since 2007 at EDF ; it is meant to address urgent issues of working conditions and work-related mental health. It relies on a few basic creeds, such as the need of a decentralized approach (solutions are to be found inside each business unit) and the need to make different occupations work together on the improvement of working conditions (managers, human resources, doctors, union representatives, health and safety departments and so on). Before quality of working life became a corporate policy, some of these employees have been willingly “enrolled” in informal networks, designed to discuss (sometimes confidentially) and deal with sensitive work-related issues. The process relies on the involvement of key actors in networks which cross usual boundaries (between departments, fields of expertise, and positions inside the company’s hierarchy). However these networks are not institutionalized. Therefore the QWL approach turns out to be both strong and weak because of its non-prescriptive and practical nature, very similar in its effects to new public management devices such as benchmarking (Didier, 2010).

An online social network is currently designed and implemented to help this new professional community share information and best practices, and capitalize knowledge. It requires the involvement of both top management and future users, and arouses questions, enthusiasm and/or doubts from the stakeholders. The observation of agents of the “real” network coping with a new online instrument (albeit designed to help them work together) reveals how complex the effects of social computing on collaborative work can be. Those are neither mere consequences of the technical device’s specifications, nor strictly determined by organizational strategies (Crozier & Friedberg, 1977). They can be understood as a series of enrolments and counter-enrolments : a construction of interests among actors that do not have once and for all the same strategy and the same preferences (Callon & Law, 1982). Developing a specific social media changes the way people work together on QWL, not on account of the media itself, but because it is enshrined in an existing social (and organizational) context which, in turns, models the media.

The second question remains unanswered at this stage of the project’s evolution : do people working on the improvement of quality of working life really benefit from their new technical environment ? Does it create any kind of “collective intelligence” ? I intend to investigate this last question by observing the online interactions between users from may 2011 (the moment the media will be opened) to june 2011.

REFERENCES

Callon Michel (1986), “Some Elements of a Sociology of Translation: Domestication of the Scallops and the Fishermen of St Brieuc Bay.” p. 196-233 in Power, Action and Belief: A New Sociology of Knowledge, edited by John Law. London: Routledge & Kegan Paul.

Callon Michel & John Law (1982), “On interests and their transformation : enrolments an counter-enrolments”, Social studies of science, 12, p. 615-625.

Crozier Michel & Erhard Friedberg (1977), L’acteur et le système. Paris : Le Seuil. Didier Emmanuel (2010), “Benchmarking. L’utilisation du chiffre dans la gestion de l’Etat”, Mouvements, 63, p. 155-161.

Latour Bruno (1991), Nous n’avons jamais été modernes. Essai d’anthropologie symétriqueI. Paris : La Découverte.