Ethical Aspects of Online Research: the Hearts of Salford website Paul Bellaby and Simon Smith with Frances Bell and Sally Lindsay University of Salford.

Ethical Aspects of Online Research: the Hearts of Salford website

Paul Bellaby and Simon Smithwith Frances Bell and Sally Lindsay

University of Salford

ESRC/Sage Online Research Methods Colloquium, 28/3/07

Why do we need research ethics?

“The need for research ethics arises when there are conflicts between the central

interests of research – i.e. the interest in new and better knowledge – and other

interests that are external to the research process” (Elgesem 2002)

Principal ethical considerations

data security research subject distress privacy and confidentiality

Where research involves human subjects, researchers verify that these issues have been handled correctly, and attempt to foresee possible conflicts of interest between the research and the integrity of participants, by obtaining informed consent

What this presentation is about

Many ethical issues are equivalent in online and offline research. This presentation concentrates on two issues that may require distinctive treatment in online research:

the privacy of online communication how to ensure consent really is informed

We draw on our experience from Hearts of Salford (HoS) for purposes of illustration

Hearts of Salford

an RCT : can use of the Internet empower disadvantaged people to manage their heart disease?an association of interests around shared CHD, cemented by local community ties a website based on Moodle, an open-source educational tool - autolinking discussion forums, blogs, glossaries and instant messaging systema facilitated first phase (6 months) followed by an attempt to transfer ownership to participants as a self-sustaining community of practice 53 men and women, 50-74 with CHD, are members of the HoS online community - same number of controls have computers and Internet access only the website will be a cultural artefact produced collectively by this community

HoS front page

Data security

security of the register from which participants drawn

Participants drawn from CHD registers held by GPs, and anonymity of heart patients who did not apply protected

security from unauthorised access to the data

Data from HoS is stored on the website server and archived on a shared drive, to which five members of the project team have access

security of the site against uninvited users

Group spaces of the portal closed to all but those with user names and passwords, - i.e. experimental group and researchers. Guests can view public areas of the portal

Research subject distress

Participants in an experimental study like HoS may experience distress

as a result of difficulties they have in using the equipment

as a result of information they find on the Internet

from sensitive exchanges within the group or with the researchers

Each participant’s GP was informed of their involvement in the study.

Potential distress due to exchanges among participants is ameliorated by moderation of the forums, initially by researchers, later by volunteers from among participants.

Informed consent

Informed consent was obtained at the outset by participants signing a paper consent form, approved by the NHS Local Research Ethics Committee, prior to their receipt of a computer, and prior to the first of three face-to-face meetings per group.

Participants were informed that:

the research is funded by the ESRC

certain interactions via the website would be monitored

the data would only be reported in aggregate form

individuals would not be identified

The initial face-to-face session was partly to reinforce the quality of the informed consent.

How informed is prior consent?

Ethics and governance approval procedures for research with patients require informed consent but prior to research.

But the research agenda is long-term and evolving organically.

“Determining not only if, but when to ask for informed consent is thus somewhat context-dependent and requires particular attention to the fine-grained details of the research project not only in its inception but also as it may change over its course.” (AoIR 2002)

This is especially apposite for online research which involves inexperienced users in a community-building exercise.

Privacy

Legal definitions have been redefined continuously as information and communication technologies became

more pervasive in society, enabling the public 'observation' of many previously private spaces

(Pittenger 2003).

Definitions in terms of rights are more stable:privacy is “the claim of individuals, groups, or institutions to determine when, how and to what extent information

about them is communicated to others” (Westin 1967: 7).

It is difficult to apply these principles to rapidly changing socio-technical systems like WWW and specific online

communities

Offline and online privacy

Offline privacy rights are enforced through reasonable expectations about how others act in particular environments. Privacy is thus protected by:

restrictions on audience that has access

restrictions on information flows

ephemerality of information

Online social norms of behaviour which protect privacy may be enforced differently. The accessibility, permeability and ephemerality of a social space may be far less legible, especially to inexperienced users.

What determines the reasonable expectations of individuals interacting online with respect to privacy?

1. The translation landscape

Expectations of privacy may be affected by the social environment of the place from which someone habitually accesses the Internet:

e.g. what expectations does someone have when engaging in 'public' debate online from the

'privacy' of their own bedroom?

HoS participants in the vast majority of cases log on to the project portal from their homes (although not necessarily alone): this may

increase their expectations of privacy.

2. Screening

Passwords and other screening procedures create expectations of privacy. Hence:

“those virtual communities that do have requirements for participation and requests for

confidentiality deserve the respect for privacy one would confer in other venues.” (Pittenger 2003)

The group pages of HoS (the discussion forums, blog spaces and messaging systems) are password-protected, so this injunction is

applicable. On the front page the areas which are private in this sense are indicated by a red border.

3. Ephemerality

As in the offline world some venues, like chat rooms, may facilitate disclosure of more sensitive information because there is no accessible record of an exchange.

On HoS we respect this convention by regarding synchronous communication (instant messaging) as private. Asynchronous discussion forums and blogs are public in a double sense: accessible to all members of a group 'quotable' for research purposes

4. Community building

If online environments function as communities, emerging group norms and the 'parochiality' of spaces can engender privacy and safety.

Researchers are urged to respect these norms by investing considerable time initially 'lurking' in the community they wish to study (Sharf 1999).

HoS is unusual because there is no pre-existing community. Norms of confidentiality are only being developed during an action research process.

An ongoing dialogue with participants is needed to ensure that their emerging expectations of privacy are not undermined.

HoS communities of interest: privacy or publicity?

Renegotiating informed consent

Fully informed consent cannot be granted at the outset of the project in a meaningful sense. By returning to informed consent, we attempt to safeguard participants' rights to both privacy and publicity.

The vehicles for this are:

end-of-project focus groups

opportunities for reflection provided via the website:

feedback of results, in the form of published papers and informal summaries, with opportunities for comment

online surveys which allow participants to view the results

Participants' input to the reporting process is integral to community-building. An ethical exit strategy necessitates that they have final decision whether to 'open' the community.

Lessons for Internet researchers - 1Experienced Internet users can use public and private contexts as strategies for handling difference or conflict. For example:

“We relegate noncontroversial information to public communication channels, while we confine our controversial or disputable views to carefully segregated private forums where the possibility of challenge is minimized” (Lievrouw 1998)

As ethical researchers, there is a tension between two duties: • to help participants become knowledgeable Internet users• to rigorously test our hypotheses within this RCT

Following a 'human subjects' research model, the overriding duty is:

‘respect the expectations established by the venue’

Lessons for Internet researchers - 2

Experienced Internet users are also cultural producers who exploit the variegated 'textual spatiality' of different online media to stratify the audiences they wish to address, based on “specific assumptions about who would use the web site” (Bassett & O'Riorden 2002).

Following a 'narrative-based' research model, a second duty is therefore:

'respect participants' choice and control over their stratification of audience'

ConclusionsRegulation of such issues as informed

consent is necessary but not sufficient to ensure ethical practice in research on health and the Internet, especially if

research involves community-building.

Ethical research has to be more a moral issue for individual researchers and their research communities than a matter for

top-down regulation.

Ethical research may also call for an evolving framework, rather than one that can be fully articulated at the outset of a

project.

References

AoIR (2002) Ethical decision making and Internet research. Recommendations from the AoIR ethics working committee. Available at: www.aoir.orgBassett, E. & O'Riorden, K. (2002) 'Ethics of Internet research: contesting the human subjects research model', Internet Research Ethics. Available at: www.nyu.edu/projects/nissenbaum/ethics_bass_full.htmlElgesem, D. (2002) 'What is special about the ethical issues in online research?' Internet Research Ethics. Available at: www.nyu.edu/projects/nissenbaum/ethics_elg_full.htmlHaigh, C. & Jones, N. (2005) 'An overview of the ethics of cyber-space research and the implication for nurse educators' Nurse Education Today 25: 3-8.Pittenger, D. (2003) 'Internet Research: An Opportunity to Revisit Classic Ethical Problems in Behavioral Research' Ethics & Behavior 13(1): 45-60.Sharf, B. (1997) 'Communicating breast cancer on-line: support and empowermnent on the Internet' Women and Health 26: 65-84.Sharf, B. (1999) 'Beyond Netiqutte: 'The Ethics of Doing Naturalistic Discourse Research on the Internet' in Jones, S. (ed.) Doing Internet Research, London: Sage: 243-56.Westin, A. (1967) Privacy and freedom, New York: Atheneum.