Ethical issues in qualitative research on internet communitiesBMJ 2001; 323 doi: https://doi.org/10.1136/bmj.323.7321.1103 (Published 10 November 2001) Cite this as: BMJ 2001;323:1103
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The internet offers patients remarkable opportunities to find support
from others in similar medical circumstances. The technology that
facilitates electronic support groups and lists, however, also permits the
collection and analysis of information that many individuals consider
private. A recent survey of webmasters and patient advocates suggests that
researchers using the internet should employ particular care with regard
to permission for use of archived material and privacy of group members.
Eysenbach and Till identify informed consent, privacy, and
confidentiality as key considerations for researchers doing qualitative
research on the internet (1). They note that to determine whether informed
consent is necessary, the researcher must determine whether postings to an
internet community are private or public communications. Many lists and
discussion boards require participants to complete a subscription process,
which leads participants to believe that their discussions occur within a
closed group. However, archival technology makes it possible for
nonmembers of many internet communities, including journalists and
researchers, to access members’ postings.
Patients’ health may improve when they participate in internet-based
support groups. Among users of web-based depression support groups, more
frequent use was associated with an increase in resolution of depression
(2). One study of women diagnosed with breast carcinoma who participated
in an electronic support group experienced reduced depression and
reactions to pain (3); in a second study of breast cancer patients,
researchers reported a reduction in depression, cancer-related trauma, and
perceived stress after a 12-week web-based support group (4). Online
support groups also provide support to caregivers, who may have minimal or
no contact with others in a similar situation within their community.
Parents of children with cancer reported getting information, sharing
experiences, receiving general support, venting feelings, gaining
accessibility, and using writing as benefits of online support groups (5).
Internet-based support groups appeal to participants for many
reasons. A study of users of online support groups for depression found
that participants had less social support than primary care patients with
major depression (2). Internet-based support groups promote access for
individuals from a wide geographic area who lack access to such groups
locally. Some individuals, particularly those with stigmatizing
conditions, may find the relative anonymity of web-based support groups
appealing. The ability to receive attention without being seen entering a
health care facility or risking a loss of privacy in other ways is another
benefit of online support groups.
Discussion group participants are the primary beneficiaries of
membership in such groups, but others may benefit from the existence of
electronic lists and groups. Journalists can use archives to learn more
about health conditions and identify potential interviewees. Academic
researchers and social scientists may find list archives to be a source of
inspiration for investigations and academic publications. Although
academic institutions generally require researchers to submit research
protocols for review prior to interaction with human subjects, few
journalists are subject to any such review process. Thus, list
participants’ perception of list privacy and the practices of those who
access list archives may be in conflict.
To determine how health discussion group participants view
appropriate use of list and archived postings, a 10-item survey was
developed to assess attitudes regarding journalists’ access to and use of
lists and archives. The instrument contained three sets of three Yes-No
questions related to a specific issue: 1) Is it permissible for
journalists to join electronic lists intended for people with specific
health conditions as a way to research assignments? 2) Is it permissible
for journalists to quote list subscribers’ comments in published media?
and 3) Is it permissible to quote list subscribers without informing the
list of the publication venue(s) and date(s)? Respondents answering the
first question in a series “No” were directed to the next series of
questions. The final question solicited additional comments.
In October 2003 the survey was posted to two electronic lists:
Medical Webmasters (MWM), an open, unmoderated list for individuals
operating medical and health-related web sites; and Patient Advocates in
Research (PAIR), a closed, unmoderated list for cancer patient advocates.
The survey was sent to the lists in a message identifying the investigator
and requesting that participants send responses to the investigator rather
than the list. The investigator had been a member of the lists for several
months prior to the study. Responses were accepted for seven days. Each
response was assigned a number and copied into a blank document. Email
addresses, names, email signatures, and personal comments unrelated to the
survey were not copied into the files to prevent identification of the
respondent during analysis. The survey response rates were 2% (11 of 539)
for the MWM list and 10.4% (16 of 154) for the PAIR list.
All MWM respondents answered the three primary questions
affirmatively, indicating that journalists may join electronic lists
intended for people with a specific health condition to research stories,
quote list subscribers’ comments in published media, and access list
archives for background research or quotation. PAIR respondents were less
supportive of these activities; 75% believe journalists may join lists to
research stories, 62.5% believe quoting list subscribers in publications
is permissible, and 56.3% believe it is acceptable for journalists to join
lists to gain access to archives for research and publication.
Agreement between respondents of the lists decreased when the
questions addressed permission issues and specific uses, such as whether
journalists could join lists specifically to access archived messages. For
all questions, the behavior deemed permissible by PAIR respondents was
more restrictive of journalists than behavior considered appropriate by
All MWM and all but one of the PAIR respondents answered the open-
ended item inviting comments. All comments were analyzed for themes common
to the respondent group and the groups combined. MWM respondents mentioned
14 distinct themes, and PAIR respondents mentioned 11 distinct themes.
Overall, 16 themes emerged, with 9 mentioned by respondents of both
groups. Themes mentioned by both groups (and the number mentioning the
* Journalists should ask permission before publishing list material
(6 MWM, 4 PAIR)
* List members have a right to privacy (2 MWM, 7 PAIR)
* Journalists should act with complete transparency (e.g., announce
their presence to the list, purpose for joining, etc) (1 MWM, 4 PAIR)
* Reading through archived messages for research is acceptable (3
MWM, 2 PAIR)
* Proper handling of posts made by a deceased person is a concern (1
MWM, 2 PAIR)
* List owners and members need to have control over research use of
posts (1 MWM, 2 PAIR)
* List owners’ facilitation of journalists’ involvement with a list
protects the members while helping the journalist (1 MWM, 2 PAIR)
* Journalists should be able to do whatever is permitted on the list
if they have the list owner’s approval (2 MWM, 1 PAIR)
* The dynamics of a list change when a journalist joins (1 MWM, 1
Although the sample size of this survey was relatively small, two
themes emerged. First, respondents from both survey populations believe
that journalists should seek permission from list members and/or
webmasters prior to use of archived information. Because they view
journalistic endeavors as research, they are likely to hold the same
expectation of researchers. This observation should not surprise
researchers inasmuch as journalists and researchers join health condition-
specific lists and visit archives with information gathering as their
Second, although patient advocates are aware that archived postings
can’t be guaranteed to remain inaccessible to nonmembers of the list or
group, they do regard lists as a kind of protected space where members may
speak frankly without concern that their words will be shared outside the
group. Most recognized that individuals acting in a research capacity can
join a list but viewed members’ desire for privacy as taking precedence
over researchers’ goals. This desire to maintain members’ privacy over
other objectives has been reported previously (6). Researchers who use
electronic list archives are likely to experience a more positive response
when they endeavor to respect members’ perceived right to privacy.
Both medical webmasters and patient advocates have substantial
experience with health-related electronic lists, the former as list
administrators and the latter as list members. Although these groups most
commonly approach list-related issues from different perspectives, both
are concerned with facilitating electronic media as a means of patient
education and support. Their perceptions about the appropriate use of
electronic lists and archived list material for journalistic research
offer insight into how both journalists and academic researchers should
approach these electronic resources.
(1) Eysenbach G, Till JE. Ethical issues in qualitative research on
internet communities. BMJ 2001;323:1103-5.
(2) Houston TK, Cooper LA, Ford, DE. Internet support groups for
depression: a 1-year prospective cohort study. American Journal of
(3) Lieberman MA, et al. Electronic support groups for breast
carcinoma: a clinical trial of effectiveness. Cancer 2003;97(4):920-6.
(4) Winzelberg AJ, et al. Evaluation of an internet support group for
women with primary breast cancer. Cancer 2003;97(5):1164-73.
(5) Han H, Belcher AE. Computer-mediated support group use among
parents of children with cancer -- an exploratory study. Computers in
(6) Smith J. Members only: electronic support groups closed to the
average surfer. JNCI 2003;90(22):1696.
Competing interests: No competing interests
Eysenbach and Till  are right to call attention to the potential difficulties of studying online communities. An underlying problem in many of their examples is that of ownership. Those who provide the mailing lists or Web sites on which online communities are based "own" those communities and have the right to set their goals. When outsiders, even ones with academic credentials, introduce their own agendas, conflict is not surprising.
One solution is for investigators to establish their own communities. As owners, they would then have the right to make research a goal. They would also, of course, have the responsibility of conducting that research ethically.
I host such a community, Psycho-Babble, and have employed two forms of prospective informed consent. The first was implicit. The main and Frequently Asked Questions (FAQ) pages informed members that a condition of posting messages was allowing me unrestricted use of them, for example, elsewhere on the site or in articles. The FAQ also reminded them that -- regardless of how private they felt the community was -- their messages would be public. I wrote an article describing the community  and made it available on the site, and the response was largely positive. Currently, prospective informed consent is explicit. My Institutional Review Board has approved the project and a disclosure statement, and I have added an official "agreement to consent" that individuals can accept by clicking a button.
Robert C Hsiung, MD
Associate Professor of Clinical Psychiatry
Department of Psychiatry
University of Chicago
5737 S. University Ave.
1. Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. BMJ 2001 Nov 10; 323 (7321): 1103-5. [Full text]
2. Hsiung RC, The best of both worlds: An online self-help group hosted by a mental health professional. CyberPsychology & Behavior 2000; 3 (6): 935-950. [Full text]
Competing interests: No competing interests
Eysenbach and Till express concerns about secretive lurking by
researchers on internet discussion lists and chat rooms, and provide
compelling examples of groups who understandably resent research
eavesdroppers. As I read their article, I wondered how their prescriptions
would apply to efforts to research such listservers and chat rooms set up
by groups whose overt agendas threaten public health and safety. Hundreds
of such sites exist in areas such as race hatred, groups intent on eroding
road safety measures, groups dedicated to opposing gun control, pro-
tobacco interest groups supported by the tobacco industry, and the anti-
immunisation lobby to name but a few.
Such groups do not welcome the presence of researchers not committed
to their values. Rather than using registration procedures to protect
their privacy, these groups use such procedures to ensure that their
discussion of strategies and tactics can proceed in an uninhibited way.
They are very much not "seeking public visibility", but are seeking to
screen out those who are likely to disagree with their ambitions. This is
precisely why efforts at successfully penetrating and reporting on their
discussions ought not be inhibited by rules developed to respect the
privacy of the sort of groups described by Eysenbach and Till. They are
concerned that publicity given to the discussions that take place on such
sites "may negatively affect group members or harm the community as a
whole." On the contrary, failure to gain intelligence on such groups
justified by placing respect for such groups' privacy ahead of concern to
publicize and thwart their often dangerous agendas would surely be
Competing interests: No competing interests