Ethical Aspects of Online Research: the Hearts of Salford website

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Ethical Aspects of Online Research the Hearts
of Salford website

• Paul Bellaby and Simon Smith
• with Frances Bell and Sally Lindsay
• University of Salford
• ESRC/Sage Online Research Methods Colloquium,
  28/3/07

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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)

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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

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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

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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 system
• a 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

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HoS front page
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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

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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 participants 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.

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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.

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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.

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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

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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?

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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.

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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.

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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

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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.

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HoS communities of interest privacy or publicity?
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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.

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Lessons for Internet researchers - 1

• Experienced 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

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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'

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Conclusions

• Regulation 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.

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References

• AoIR (2002) Ethical decision making and Internet
  research. Recommendations from the AoIR ethics
  working committee. Available at www.aoir.org
• Bassett, 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/ethi
  cs_bass_full.html
• Elgesem, D. (2002) 'What is special about the
  ethical issues in online research?' Internet
  Research Ethics. Available at www.nyu.edu/project
  s/nissenbaum/ethics_elg_full.html
• Haigh, 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.