Research Ethics and the Governance of Research Projects: the Potential of Internet Home Pages
by Martyn Denscombe
De Montfort University
Sociological Research Online, Volume 10, Issue 3,
Received: 18 Jan 2005 Accepted: 30 Jun 2005 Published: 30 Sep 2005
This paper explores the potential of research project Home Pages in relation to the growing need for good governance of research projects. In particular, the paper considers the benefits such web pages might have in terms of research ethics and argues that research project Home Pages can provide a very straightforward, practical means of addressing a number of ethical issues related to both on-line and off-line research. Limitations to the use of research project Home Pages are also discussed and conclusions are drawn about the value of establishing appropriately designed research project Home Pages as an integral component of social research protocols.
Keywords: Home Pages, Research Governance, Research Ethics, Internet Research
Introduction1.1 Where research involves human beings - as subjects, participants or collaborators - their dignity and their rights must always be respected by those undertaking the investigation. This has become an underlying principle of research whose origins are easily traced to the international agreements embodied in the Nuremberg Code (1947) and the Declaration of Helsinki (1964). What is new, however, is the extent to which researchers are being required to address ethical issues explicitly as a component of their research design and the extent to which they are being required to comply with a growing number of formal expectations about the good governance of research projects. More than in the past, they face the need to submit their research plans for formal scrutiny and must justify the conduct of their investigation to a wide audience of stakeholders in the research. This paper explores the potential of research project Home Pages in relation to this changing need. In particular, it considers the benefits such web pages might have in terms of research ethics and the governance of research projects, and argues that research project Home Pages can provide a very straightforward, practical means of addressing a number of ethical issues related to both on-line and off-line research.
Research ethics and the governance of research projects: a changing picture2.1 The growth of Internet-based research has prompted a reflection by the research community on the governance of research and on questions of ethics (see, for example, Bruckman 2002, Buchanan 2004, Nosek et al. 2002). Wary about the potential abuse of Internet-based research by unscrupulous or naïve researchers, a considerable amount of attention has been paid to the new kinds of challenge such research faces in terms of things like respect for the rights of those being researched and, specifically, the duties of researchers with regard to privacy, confidentiality and informed consent (Bober 2004, Cho and LaRose 1999, Roberts et al. 2004, Stern 2004). The discussion of these issues at a theoretical and principled level has been a positive development and, arising from the debate, there have been a number of recommendations to researchers about the ways in which they might address the needs for privacy, confidentiality and informed consent (e.g. Ess 2004,Nancarrow et al. 2001).
2.2 Another driving force behind the increased emphasis on ethics and governance, arguably more influential, has been the emergence of regulatory frameworks established at a national level. In both the US and the UK these have stemmed primarily from a medical agenda concerned with protecting the rights of subjects/participants and they have been instigated following public reaction to scandals relating to medical ethics. In the US, the outcome has been that human research is governed by specific legislation in the form of the National Research Act (1974) coupled with quasi-official guidelines contained in the Belmont Report (1978). The Office for Human Research Protection, established in 2000, ensures compliance with ethical standards in relation to all government sponsored research involving human subjects (OHRP 2000). In the UK, the research governance agenda has been driven forward in recent years by the organ retention scandal at Alder Hey Hospital. In 1999, it was discovered that human tissues and body parts had been removed and retained for research purposes without the knowledge or consent of relatives of the deceased. As a consequence of the public reaction to this affair, the Department of Health established the Research Governance Framework. This framework, in its own words, 'defines the broad principles of good research governance and is key to ensuring that health and social care research is conducted to high scientific and ethical standards'(Dept. of Health 2001).
2.3 The impact of the Research Governance Framework in the UK context has been twofold. First, it has moved the agenda forward for all research that uses human subjects/participants and its significance has not been restricted solely to the spheres of health and social care research. Its influence is discernable across the spectrum of the social sciences - echoed in the clear message for social researchers emanating from sources such as the Economics and Social Research Council (ESRC 2004), central government (NSO 2002) and the EU (Respect 2004) concerning the need for increased accountability with regard to research ethics and the governance of research projects. Second, its concern with 'governance' serves to widen the scope of activities and relationships beyond those traditionally linked with research ethics. This is because the term 'governance' incorporates:
- systems and practices designed to ensure probity and legality with respect to matters of money, employment and intellectual property.
It is clear that frameworks such as that operated by the UK's Department of Health are intended to cover the entire gamut of people and processes involved in the execution of any specific piece of research. Certainly, this incorporates a concern with research ethics but, as well, it spans matters of scientific integrity, dissemination of information, the health and safety of those employed in research, plus matters of finance and intellectual property. The concerns of governance go beyond the realms of the researcher and the subjects/participants to cover those who manage the research, those who fund the research and those who host research in their organizations. In the words of the Department of Health framework, it concerns 'managers and staff, in all professional groups, no matter how senior'(¶1.9). This facet of the term 'governance' is broadly concerned with matters of quality assurance. It involves establishing ways of monitoring performance and learning how to constantly improve matters by ensuring that these are an integral, built-in part of the overall system of conducting research on humans. The concept of governance, in this sense, relates to systems and procedures that mutually reinforce the development of good practice and which facilitate standards of conduct and standards of output that meet quality criteria. (This echoes the way the concept operates in relation to corporate governance.)
2.4 The notion of 'governance' also incorporates:
- the conduct of research in a manner that embraces open accountability (clarity and transparency) and enables some sense of democratic involvement among all those who participate in the research.
2.5 The first of these two facets of governance requires compliance with formal processes. It is worth acknowledging 'up-front' that Home Pages, by their very nature, will hardly address the needs of bodies such as Ethics Committees, Institutional Review Boards and various management committees who will (rightly) require formal systems of accountability with regard to the finance, employment law and intellectual property rights (the formal aspects of governance outlined above). The potential of Home Pages, instead, needs to be considered in relation to social researchers' self-regulatory practices - in particular those linked to questions of transparency and involvement in the relationship between the researcher and the subjects/participants and the degree to which research is conducted in a spirit of openness and mutual trust. It is here, specifically in relation to the second facet of governance, that Home Pages may be able to provide researchers with an eminently practical resource that they can use in the quest for the good governance of research projects.
The potential of Home Pages: publicity3.1 The idea of a Home Page has developed along with the World Wide Web and has come to mean two things. One connotation of a Home Page is the page that is initially located by the web browser. The computer user sets the browser to select a preferred site, and the 'Home Page in this sense is the first that appears on the computer screen when the browser is started. More generally, however, the term is recognised as meaning the main page of a web site - the page of a web site that contains an index of the other pages and which provides links to these pages and to other relevant sites . It is this latter meaning that is used in this paper.
3.2 From sophisticated sites produced by professionals for large organizations down to simple sites constructed by recreational users, Home Pages represent the primary point of contact where the 'visitor' is introduced to the content and the purpose of the site. Home Pages on the web provide access points where individuals or corporations can introduce themselves, their products, the service they provide or the facility offered by the website. In effect, Home Pages have become the cyber-world equivalent of the front door, reception lobby and shop window rolled into one. They are the public face, the greeting, the invitation to stay around to look at what is on offer in the site.
3.3 As such, Home Pages have a lot to say about the individual or organization they represent and it is not surprising that they have become the subject of research in their own right. Their content and their design have been studied both in terms of how they operate as a form of communication (Chandler & Roberts-Young 1998, Dillon & Gushrowski 2000, Potter 2002, Seale & Pockney 2002, Stanton & Rogelberg 2001, Thelwall & Harries 2004) and in terms of what they reveal about the constructors of the site (Bober 2004, Kozinets 1998, Papacharissi 2002, Pitts 2004). But these very qualities that attract researchers to the study of Home Pages also hold the key to their potential as a resource that researchers can use to underpin their own research projects. As a 'front door, reception lobby and shop window', Home Pages offer researchers a portal for their work. They provide the means to publicise work to a very wide audience and to make it more accessible - accessible not just in the sense of reaching across geographical boundaries to a global audience but also through the way web and browser technology promotes accessibility to those who are sight impaired and the way it allows translations of texts into different languages. Home Pages, in these respects, have enormous potential for researchers in terms of advertising their work and making the findings widely available. They can help researchers meet the expectations of sponsors who increasingly incorporate formal expectations about publicity into their funding agreements. As Duffy (2000:349-350) has noted, the situation is such that 'all good health-related R&D strategies and research programmes now carry an explicit commitment to dissemination'. And, as she goes on to argue, 'organizations increasingly look to new technologies to service this commitment'.
The potential of Home Pages: accountability and transparency4.1 The potential of Home Pages is not limited to matters of publicity. Used appropriately, they can also provide a form of public accountability that fits nicely with the growing emphasis on good research governance. The point is not just that good research is conducted in accord with a recognised code of conduct; in the current climate the crucial point is that it needs to be seen to be operating in accord with such standards. This is where a Home Page, with appropriate information posted on it, can meet the needs of researchers quite effectively.
4.2 At the same time the Home Page can be used to foster transparency. The public accessibility of the Home Page can encourage researchers not to hide things away - fearing that participants might be bored by the minutiae of detail or deterred by the sheer volume of material - but to make information about the design and conduct of the research available to participants should they wish to 'read the fine print'. The chances are that most participants would not be sufficiently interested to read beyond the first page but the principle of transparency is an important one to observe.
4.3 To achieve greater accountability and transparency the Home Page can be used to disseminate information on three key areas. First, it can address scientific integrity - the need to uphold scientific standards in terms of integrity, impartiality and the fair treatment of data. A research project Home Page can contain information that speaks to the scientific integrity of the research by providing information on things like:
- research design
Research that is poorly designed wastes the time of the participants and potentially exposes them to risks that cannot be justified. There is, for this reason, an ethical requirement for research to be well designed. Details of the strategy and methods employed in the investigation can be posted on the Home Page, or visitors can be directed via a hyperlink to another page that has the relevant information. Evidence can also be presented on the value of conducting the research and a case made for the benefits to be gained from undertaking the inquiry. In such a way, the design of the research can be opened up for public scrutiny and evaluation.
- researcher credentials
Codes of practice generally stipulate that researchers should be suitably qualified to conduct the investigation and that they should have the necessary experience and expertise to safeguard participants from harm. The research project Home Page can provide information that testifies to this. It can contain sufficient details about the researcher's professional life to assure participants about the expertise, credentials and general bona fides of the researcher. In the case of academic researchers whose Home Page is located on a university server the URL address, in its own right, might be perceived as supportive of the researcher's credentials.
- impartiality, objectivity and the role of sponsorship
Depending on the particular research background in question, there is a normal assumption that research should be carried out in an open-minded fashion with a sense of independence, objectivity or neutrality. The Home Page offers researchers the opportunity to make a public declaration to this effect or to identify their sponsors and any conflict of interest that might be considered to exist.
4.4 Second, Home Pages can address the criterion of compliance with the law - particularly with respect to data protection and intellectual property rights. Home Pages provide the researcher with the opportunity to specify what measures have been put in place to ensure that the project complies with relevant legislation. Depending on the circumstances, this could cover:
- data security.
Measures taken to safeguard the data and assurances about the use of, and disclosure of, the data can be provided via the Home Page.
- ownership of the data.
Issues relating to copyright and intellectual property rights can be addressed.
- methods of research.
4.5 Third, Home Pages can be used in relation to the protection of the participants' interests - the need to avoid harming the rights and interests of those who are involved in the research, in particular by gaining informed consent from participants, protecting their anonymity and taking reasonable steps to ensure safety. It is axiomatic to codes of research ethics that no-one should suffer harm as a consequence of having participated in research. In practical terms the interests of participants tends to be assured in four ways - each of which can be discussed on the Home Page.
- informed consent.
The Home Page can provide relevant information for prospective and current participants so that their consent, should they choose to give it, can be truly 'informed'. A Home Page, coupled with hyperlinks to other pages and sites, is better suited to supplying customer-determined levels of information than paper-based 'one-size-fits-all' information sheets. It can allow participants to choose how much information they require, and the information can be flexible enough to meet the competence levels of particular people involved in the research, including some vulnerable groups. What the Home Page cannot do so easily, though, is act as the vehicle for consent. While for some researchers a tick-box or email response might be deemed adequate means of consent for others such digital versions might be regarded as inadequate substitutes for the 'real thing' - i.e. hand-written signatures on hard-copy versions of the consent form.
By default, protecting the interests of participants involves keeping their real names and actual identities out of the public domain. In effect, this means affording participants anonymity in any information from the research that is made public. A Home Page allows researchers to state their commitment to this principle and to provide necessary assurances to participants.
There is generally an assumption that the interests of participants are best protected by treating the information they provide as confidential. As with anonymity, a Home Page offers the opportunity to state a commitment to this principle.
A 'research project' Home Page rather than a researcher Home Page5.1 Many researchers, like other individual members of the public and like other corporations, already have Home Pages. In the case of academic researchers, it is particularly commonplace to find Home Pages that contain a photograph of the person along with a brief curriculum vitae (or resumé) outlining research interests, publications and membership of relevant professional associations. The focus of the content is personal. Although it tends not to contain details of the individual's private life it is personal in the sense that the contents of the site centre around the professional identity and achievements of the individual. These are, in effect, 'researcher Home Pages'.
5.2 The information contained on such pages might suit the purposes of research by providing the visitor with details about the institutional location of the researcher, the professional status of the researcher, and his/her track record of research. However, there are three reasons why a researcher Home Page is unlikely to provide an adequate platform in its own right. First, it will have been designed and written for a different audience. Hine (2004) has made the point that researchers should construct their research project Home Page in a way that encourages visitors to perceive the researcher and the proposed project in a positive light. This might mean designing the site to meet the needs of an audience other than professional peers and, to this extent, might call for a dedicated research site rather than one that tags information onto a site whose design is based on the house style of the organization hosting the site. Second, it is not likely to contain sufficient detail about the specific research project. A researcher Home Page is very unlikely to satisfy the requirement for project publicity simply because both its design and its content will tend to centre around the professional biography of the researcher rather than the aims, design and findings of a specific research project. And third, it might not allow the researcher to tailor the amount of information about him/herself and the project to suit the particular audience for whom the site is intended. This can be important in certain kinds of research where too much information could contaminate the responses of the participants or even threaten the security of the researcher (see below).
A research project Home Page: practicalities and limitations6.1 From a practical point of view, the potential of research project Home Pages owes much to the fact that they are relatively inexpensive to produce and maintain. It is unlikely, therefore, that social researchers will be prevented from creating a research project Home Page through resource constraints. Nor should researchers face particular difficulties when it comes to the technical skills required for the construction of a research project Home Page. Creating a Home Page is quite straightforward for anyone other than a computing novice. Basic web hosting services are available at low cost and the software for producing basic web pages is quite readily available. Indeed, Internet Service Providers often include the facility to create and host personal web sites as part of the service package they provide. Many researchers, in any case, can call on the technical support services of their employing organization that will host and maintain a Home Page on behalf of the researcher - effectively eliminating technical know-how as a factor prohibiting the exploitation of Home Pages. Academic researchers operating under the auspices of a university are an obvious example. The production of a research project Home Page, in other words, faces no significant obstacles when it comes to resourcing or technical know-how.
6.2 Home Pages, are also easily accessible. As an on-line phenomenon their value as a resource for the good governance of research obviously depends on the extent to which people have access to the Internet. Now, whilst there is not yet universal access to the Internet, in developed societies the proportion of households who are on-line is rapidly increasing. Even by 2003, 53% of adults in the UK had Internet access at home (i.e. around 13 million homes) and broadband connections were available to nearly 90% of households with new subscriptions to broadband ISPs running at over 50,000 a week (Ofcom 2004).
6.3 The value of Home Pages, it follows, is not restricted to the realms of Internet research per se. Their location on the Internet opens up their usefulness to a very wide audience and does not limit their relevance in any way to just those pieces of research that are based on the Internet. Because Home Pages are available to a wide population of people they can be used in conjunction with all kinds of social research.
6.4 There are circumstances, however, when the use of a research project Home Page might compromise rather than aid the research. Whilst in principle it is good for researchers to be open and honest about the purpose and methods of their investigation, and whilst it generally held that participants should be adequately informed about the nature and possible consequences of their involvement in the research, some kinds of research could be ruined if participants have a clear understanding of what the research is about. In the case of covert research, such as some forms of ethnography and some observational studies, it is obviously absurd to publicise the nature of the research on a web site. Secrecy is the key to the success. Yet even here there might still be a role for a research project Home Page. When the data collection is complete there might possibly be the case for 'going public' using a research project Home Page as a kind of 'cyber-debriefing' after the event. Doing so could hardly have a bearing on the matter of informed consent, but it might go some way towards retrieving the moral high ground of transparency and meeting the general requirement on researchers to be open and honest in relation to the conduct of their research. It would also help to publicise the research and its findings and thus meet the pressure on funded research identified earlier in the article to gain wide publicity.
6.5 Another caveat concerning the use of a research project Home Page relates to those circumstances when the research calls for a level of deception or where there are concerns that if participants know too much about the purpose of the research this could contaminate the findings. Plenty of psychological research falls into this category, but the point is relevant for a variety of research in the social sciences where it recognised that if participants 'know' what the researchers are trying to investigate they might be swayed (consciously or not) to provide answers they believe to be the 'right' ones or answers they believe the researchers expect them to provide. Awareness of the real purpose of the research can militate against measurement of the real attitude or behaviour. This methodological issue, of course, is well known but the question arises as to whether the full disclosure of information pertaining to the researcher credentials, research aims and research design through a research project Home Page might seriously compromise the validity of the data collected.
6.6 Too much information could not only jeopardise the quality of the data, it could also affect the relationship between the researcher and the researched in a way that could have negative rather than positive consequences. Hine (2004) has made the point that access to a research project Home Page influences the balance of power between the researcher and the participant by allowing the participant to delve into the background and history of the researcher. In effect, a research project Home Page allows the participant to know a lot more about the researcher than the researcher will know about the participant. The point is significant. In positive vein, the higher level of disclosure associated with a research project Home Page can go some way towards democratising the relationship between the researcher and the researched, effectively empowering participants (Hine 2004). In negative vein, there are certain areas of research on sensitive topics where full disclosure of information relating to researchers might expose them to risks that could be unacceptable. The information on a research project Home Page, of course, ought to be restricted to details about the researchers' professional life; their qualifications, professional experience, past research record and place of work. These details would be posted by way of evidence that the researchers had the necessary expertise and experience for undertaking the particular piece of research. However, to the extent that such details (and possibly more) are made publicly available - easily visible on the web to anyone who cares to look - there is a matter of the rights of researchers to privacy. Researchers might even feel vulnerable to e-stalking, possibly even real-world stalking, as a direct consequence of the demands to exhibit details of themselves in such a high profile manner. The higher level of disclosure might even impinge on human rights. Researchers, as employees and as private citizens, have a right to safety and privacy. In line with Article 5 of the Human Rights Act 'everyone has the right to liberty and security of person' and in line with Article 8 'everyone has the right to respect for his private and family life, his home and his correspondence' (HMSO 1998). For such reasons, the pursuit of openness and transparency in research through the use of research project Home Pages has to be tempered by respect for the interests of the researcher as well as the researched and if the adoption of research project Home Pages were not to take this into account it would be at best naïve, at worst a dangerous folly.
6.7 Research project Home Pages, then, should not be constructed with a view to exposing for public consumption every minute detail about the research and the researchers. There will be occasions when researchers might need to limit the full disclosure in order to avoid prejudicing the responses from participants and there will be circumstances where concerns for privacy and safety might require the information about the researchers to be judiciously edited. Information might need to be fed onto the page at different times and in different stages of a research project in a way that avoids the possibility of providing participants with details that could prejudice their response. The underlying point is that research project Home Pages need to be managed in order to meet the real-world practical demands of conducting social research. They should be regarded as a dynamic resource - changing over time to reflect the practical demands of the research.
Conclusion7.1 Research project Home Pages, it has been argued, not only provide a resource for publicity, they also provide a means for public accountability. Conventionally, the scrutiny of the research design by ethics committees and institutional review boards has been conducted 'behind closed doors'. However, use of the Internet provides the prospect of the research being opened to far more public scrutiny. As Reips (2000) has argued, the high visibility of (overt) Internet research and its increased public availability opens on-line research to evaluation by a wider audience - including potential participants. To this extent, there is added impetus to comply with standards - and be seen to comply with them. But it is not just on-line research that can be rendered more publicly accountable. There is little reason to prevent any social research project, whether it is on-line or off-line, cyber-world or material world, from using a research project Home Page. In these circumstances, the case has been made that:
- research project Home Pages offer a voluntary, self-initiated means for dealing with the requirements of research ethics. They provide an eminently practical tool for 'self-governance' that addresses a public audience of a) potential participants, b) actual participants, c) other researchers.
7.2 Given the benefits of a research project Home Page for both publicity and governance, and in view of the fact that researchers should not be deterred by matters of cost or technical know-how, there is a case for researchers producing a research project Home Page as a matter of routine good practice. Those who fund research and those who are asked to participate in research, indeed, might reasonably come to expect that researchers use a dedicated research project Home Page as part of the good governance of research. Indeed, in the current climate (with its expectation that researchers publicize their work widely and demonstrate good governance of their projects) there is a strong case that:
- research project Home Pages should become a normal feature of research publicity - possibly becoming established in due course as an expected component of all social research protocols.
7.3 The point has also been made that the contents of the research project Home Page and its links need careful consideration. Trying to include everything is not necessarily the answer. Even if this were possible, there are occasions when researchers might need to restrict information about the true purpose of the research. And there are privacy and security issues affecting the researchers themselves that might also limit the contents of the research project Home Page. Mindful of this, the third conclusion to be drawn is that:
- research project Home Pages need to be appropriately managed to take account of the specific needs of the research and the personal rights of the researchers.
7.4 Finally, it needs to be borne in mind that research project Home Pages cannot represent a one-stop shop for all matters relating to the good governance of research projects. They cannot provide a substitute for the facet of 'good governance' which involves compliance with standards that are established externally as mandatory rather than voluntary requirements. There must be the caveat, therefore, that:
- research project Home Pages, in their own right, are unlikely to satisfy the 'formal-governance' of research in relation to an institutional audience of a) ethics committees/IRBs, b) regulatory bodies and c) professional associations.
Notes1A Google search for a definition of 'Home Page' produces, most commonly, the statement: 'Several meanings. Originally, the web page that your browser is set to use when it starts up. The more common meaning refers to the main web page for a business, organization, person or simply the main page out of a collection of web pages'. <http://www.matisse.net/files/glossary.html>, <http://www.netbenefit.com/support_glossary.html>, <http://www.acmi.net.au/AIC/phd9460.html>).
Alternatives include 'The first page on a Web site, which introduces the site and provides the means of navigation' <http://www.getnetwise.org/glossary.php> and 'A Home Page is a web page. In most familiar terms, it is a personal page for an individual. It can also be the basic main page for a more complex web site for individuals, organizations, or web communities' <http://www.walthowe.com/glossary/h.html>. Sites accessed 26.11.04.
2The main headings used here echo those established by the Respect code of practice <http://www.respectproject.org>. The Respect code integrates ethical guidelines and codes of good practice of key professional bodies throughout Europe. In the UK context, this includes the Social Research Association <http://www.the-sra.org.uk>, the British Sociological Association (<http://www.britsoc.co.uk>, the British Educational Research Association <http://www.bera.ac.uk> the Economic and Social Research Council <http://www.esrc.ac.uk>, the Market Research Society <http://www.mrs.org.uk> and the British Psychological Society <http://www.bps.org.uk>.
3Contrary to the usual emphasis on openness, such covert research must be justified as an exception to the standard guidelines for the ethical conduct of an inquiry. It needs to make the case that if participants knew they were being studied they would react abnormally, and that this would defeat the object of research. It needs to justify the aims of the research as being beneficial and worthwhile. And it needs to make a case that the unwitting participants were not unduly harmed as a result of the research. (See Glaser et al. 2002 for a good example of such a justification.)
ReferencesBELMONT REPORT (1978) Report of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Washington, DC: Department of Health, Education and Welfare.
BOBER, M. (2004) 'Virtual Youth Research: an Exploration of Methodologies and Ethical Dilemmas from a British Perspective', in E. A. Buchanan (editor) Readings in Virtual Research Ethics. Hershey, PA.,: Information Science Publishing.
BUCHANAN, E. A. (editor) (2004) Readings in Virtual Research Ethics. Hershey, PA.: Information Science Publishing.
CHANDLER, D. and ROBERTS-YOUNG, D. (1998) The Construction of Identity in the Personal Homepages of Adolescents. <http://www.aber.ac.uk/media/Documents/short/strasbourg.html> (Accessed.06.12.04)
CHO, H. and LAROSE, R. (1999) 'Privacy Issues in Internet Surveys', Social Science Computer Review, Vol. 17, No. 4, pp. 421-434.
DEPARTMENT OF HEALTH (2001) Research Governance Framework for Health and Social Care. London: The Stationery Office <http://www.dh.gov.uk/PublicationsAndStatistics/> For Scotland the provision is outlined at <http://www.scotland.gov.uk/about/HD/CSO/00016877/resgovernance.aspx>.
DILLON, A. and GUSHROWSKI, B. A. (2000) 'Genres and the Web: is the Personal Home Page the First Uniquely Digital Genre?', Journal of the American Society for Information Science, Vol. 51, No. 2, pp. 202-206.
DUFFY, M. (2000) 'The Internet as a Research and Dissemination Resource', Health Promotion International, Vol. 15, No. 4, pp. 349-353.
ESS, C. (2004) 'Ethical Decision-making and Internet Research; Recommendations from the AoIR Ethics Working Committee', in E. A. Buchanan (editor) Readings in Virtual Research Ethics. Hershey, PA.: Information Science Publishing.
ESRC (2004) Research Ethics Framework. Swindon: Economic and Social Research Council. <http://www.esrc.ac.uk/esrccontent/ourresearch/research_ethics_framework.asp> (accessed 11.05.05)
EUROPEAN COMMISSION (2001) White Paper on European Governance Brussels:European Commission, 25th July 2001 <http://www.euractiv.com/Article?tcmuri=tcm:29-117499-16&type=LinksDossier>.
GLASER, J., DIXIT, J. and GREEN, D. (2002) 'Studying Hate Crime with the Internet: What Makes Racists Advocate Racial Violence?', Journal of Social Issues, Vol. 58, No. 1, pp.177-193.
HINE, C. (2004) Virtual Ethnography Revisited. ESRC Research Methods conference, St Catherine's College, Oxford. July 2004.
KOZINETS, R.V. (1998) 'On Netnography: Initial Reflections on Consumer Research Investigations of Cyberculture', Advances in Consumer Research, Vol. 25, pp.366-371.
NANCARROW, C., PALLISTER, J. and BRUCE, I. (2001) 'A New Research Medium, New Research Populations and Seven Deadly Sins for Internet Researchers', Qualitative Market Research, Vol. 4, No. 3, pp. 136-149.
NSO (2002) National Statistics Code of Practice. London: Office for National Statistics. <http://www.statistics.gov.uk/about/national_statistics/cop/downloads/StatementRD.pdf> (accessed 11.05.05)
NOSEK, B. A., BANJANI, M. R. and GREENWALD, A. G. (2002) 'E-research: Ethics, Security, Design, and Control in Psychological Research on the Internet', Journal of Social Issues, Vol. 58, No. 1, pp. 161-176.
NUREMBERG CODE (1947) Permissible Medical Experiments. Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10. Nuremberg October 1946 - April 1949, Washington. U.S. Government Printing Office (1949-1953), vol. 2. pp. 181-182.
OFCOM (2004) The Ofcom Internet and Broadband Update - April 2004. Office of Communications. <http://www.ofcom.org.uk/research/telecoms/reports/int_bband_updt/> (accessed 09.05.05)
PAPACHARISSI, Z. (2002) 'The Self Online: the Utility of Personal Home Pages', Journal of Broadcasting and Electronic Media, Vol. 46, No. 3, pp. 346-269.
PITTS, V. (2004) 'Illness and Internet Empowerment: Writing and Reading Breast Cancer in Cyberspace', Health: an Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, Vol. 8, No. 1, pp. 33-59.
POTTER, R. F. (2002) 'Give the People What They Want: a Content Analysis of FM Radio Station Home Pages', Journal of Broadcasting and Electronic Media, Vol. 46, No. 3, pp. 369-385.
REIPS, U.-D. (2000) 'The Web Experiment Method: Advantages, Disadvantages and Solutions', in M. H. Birnbaum (editor) Psychological Experiments on the Internet. New York: Academic Press.
ROBERTS, L., SMITH, L. and POLLOCK, C. (2004) 'Conducting Ethical Research Online: Respect for Individuals, Identities and the Ownership of Words', in E.A. Buchanan (editor) Readings in Virtual Research Ethics: Issues and Controversies. Hershey PA.: Information Science Publishing.
SEALE, J. K. and POCKNEY, R. (2002) 'The Use of the Personal Home Page by Adults with Down's Syndrome as a Tool for Managing Identity and Friendship', British Journal of Learning Disabilities, Vol. 30, No. 4, pp. 142-149.
STANTON, J. and ROGELBERG, S. (2001) 'Using Internet/intranet Web Pages to Collect Organizational Research Data', Organizational Research Methods, Vol. 4, No. 3, pp.200-217.
STERN, S. R. (2004) 'Studying Adolescents Online: a Consideration of Ethical Issues', in E.A. Buchanan (editor) Readings in Virtual Research Ethics: Issues and Controversies. Hershey PA.: Information Science Publishing.
THELWALL, M. and HARRIES, G. (2004) 'Can Personal Web Pages That Link to Universities Yield Information About the Wider Dissemination of Research?', Journal of Information Science, Vol. 30, No. 3, pp. 240-254.