Description
Read the following two cases: Ethical Issues in Using the Internet in Research—1 PDF and Ethical Issues in Using the Internet in Research—2 PDF. Address the following:Identify three ethical issues that might arise in the conduct of the research present in the cases. For each, explain why it is an ethical issue and how it may pose a challenge in conducting the research.Select one of the issues you identified and describe how you would address this issue to comply with both legal and professional standards of practice.Support your responses with authoritative resources.Rubric below.
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Research
Ethics Review
http://rea.sagepub.com/
Ethical Issues in Using the Internet in Research: Commentary
Paula McGee
Research Ethics 2008 4: 117
DOI: 10.1177/174701610800400307
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Research Ethics Review (2008) Vol 4, No 3, 117–119
© The Association of Research Ethics Committees 2008
Case study 11
Ethical issues in using the internet in
research: commentary
PAULA McGEE
Birmingham City University, Birmingham, UK
This study appeared in full in the last issue of Research Ethics Review (2008; 4 (2): 68). MJ’s research focuses on
those patients with brain damage following trauma such as a road traffic accident. She wants to find out about their
experiences of daily life once they have been discharged from hospital. She plans to use a phenomenological approach
in which each participant will be asked to take part in a series of in-depth interviews, via email, over a period of
about two years. These interviews will allow her to compare participants’ experiences in different parts of the UK.
MJ has a research partner in Auckland; the two of them are planning a similar series of interviews in New Zealand
to allow for comparison between participants’ experiences in the two countries.
Questions for discussion
What ethical issues might arise in the
conduct of this research?
MJ’s research reflects a growing trend in the use of
electronic means to gather and record data. This is
particularly the case where studies focus on the needs
and experiences of people who find other research
methods too demanding. Some previous studies on
adults who have survived traumatic brain injuries
illustrate this point. Egan et al. [1], for example, conducted email interviews in Australia with adults who
had survived traumatic brain injuries. When asked
their opinion of this method of data collection, participants ‘overwhelmingly reported that they preferred
email interviewing to a face-to-face encounter’.
Reasons for this preference included difficulties in
coping with the multiple stimuli generated in face-toface meetings in which verbal and non-verbal signals
have to be de-coded alongside whatever is being said,
the need for frequent breaks because of pain or other
physical problems, and limited energy levels. Using
email to collect data allowed participants to take part
in their own time, as and when they felt able, and
take breaks whenever they liked.
Thus, participation can be combined with other
activities such as watching television or minding children [2]. Participants may be widely dispersed over
large geographical areas and still be able to take part;
the researcher will not have to make appointments or
bear the costs of travel [1,3,4]. The lack of face-toface communication can have a disinhibiting effect,
enabling participants to talk frankly about issues that
they might otherwise feel too embarrassed or unable
to discuss [2]. Thus participants who have survived
traumatic brain injury, may feel able to talk freely, in
emails, about those aspects of their lives which those
immediately involved in caring for them do not wish
or know how to address.
However, using email can also create a number of
challenges for MJ. First is the issue of access and
skills. Whilst email and the internet have the potential to enable the recruitment of participants from
many different social and geographical settings they
also may exclude the poor, elderly and, unemployed
[3]. MJ ought to consider whether the people she
plans to study have access to email and the skills
required to take part in the study. Egan et al. [5,6]
developed a training programme for survivors of
traumatic brain injury. All those involved had cognitive-linguistic impairments but proved able to learn.
If they are to take part in research, participants need
to be literate in the language used in the project, able
to switch on a computer, and know how to use email.
Training may help to make the project more attractive
to potential recruits and be seen, by them, as one of
the benefits of taking part. Thus MJ could say, in her
information for participants, that training in basic
computer skills and in using email will be given as
part of the project. However, training is only useful if
it is backed up by good support so that participants
know whom to turn to if difficulties arise.
Researchers should be computer literate and familiar
with the procedures they are asking participants to
use. They should either able to cope with electronic
problems themselves or have good technical support
in place.
Second, MJ will need to consider the ethical principle of respect for autonomy [7]. Potential participants should be regarded in the same light as anyone
else invited to take part in research. Participant information is just as important, although MJ can explore
the possibility of different modes of presentation such
as podcasts, rather than text, providing that these
118
Paula McGee
meet research governance standards. Consent could
also be recorded verbally and stored in a sound file
unless a written signature is deemed essential and can
be obtained [8]. What matters is that potential participants receive appropriate information and are able to
make informed decisions about whether they wish to
take part. However, extra care may be needed in
obtaining consent from those who have survived
brain injuries. Egan et al. [1] asked each potential
participant to nominate a support person who could
go through the information with them and verify
their understanding. The involvement of the support
person continued throughout the project providing
help if the participant became distressed and acting as
a point of contact for the researcher if she became
worried about an individual. Consent was also
obtained from legal guardians, where these had been
appointed. On paper, this approach seemed very reasonable but nine people, that is to say half, of the participants deeply resented it. They argued that they
were highly dependent on others for every aspect of
their lives and their involvement in the project provided a space in which they could deal with something by themselves; the project offered one small
step towards independence. Clearly the views of these
participants did not match those of researchers and
REC members who tend to regard those with brain
injuries as ´vulnerable`. Egan et al’s research [1]
demonstrates that ideas about vulnerability may be
experienced as patronising and perhaps unhelpful by
those they are intended to protect. One solution to
this issue may be found in consulting directly with
people who have survived brain injury and trying to
elicit their views on the best approaches to use.
Third, and allied to respect for autonomy, is the
ethical principle of non-maleficience, the avoidance
of harm [7]. Data collection is likely to remind participants of very painful experiences: the events surrounding their trauma, being in hospital, fear of
death, changes in family relationships and coping
with, what for some, may be a profound disability and
loss of independence. Such recollections can be difficult for both the participant and the researcher. The
researcher has a responsibility to ensure that all reasonable steps are taken to help participants cope with
the aftermath of the interview. Providing appropriate
help requires careful thought, the ability to anticipate
some of the problems that may arise and a willingness
to try different approaches. For example, a debriefing
programme might be developed in the form of a podcast that could be sent either when the interview is
complete or at any point at which the researcher
becomes concerned about a participant’s well being
[8]. Alternatively, it may be appropriate to identify
and recruit help from local sources of support. Egan
et al. [1] were correct in principle to appoint local
support people but more consideration was needed to
clarify their role. Much depends on the individual situation; the researcher ‘must decide on a case-by-case
basis whether the distressing information demands a
response, if a response or intervention is indeed a
possibility’ [9]. From the researcher’s perspective,
coping with distressing interview content can be very
stressful and disturbing whether it arises in email or
face-to-face encounters. MJ may need to arrange
some debriefing support, especially if she has not previously undertaken work with adults who have
acquired serious disabilities.
Concerns about distressing content lead into considerations of privacy and the ways in which this may
be compromised by the research. Participants will
need to be assured that the information they provide
will be treated in confidence and that they will not be
identified in any reports or documents. This may be
particularly important for those seeking legal redress
or who are engaged in other forms of litigation, such
as access to their children, in which their current
mental state and abilities may be subject to assessment. Those attempting to rebuild their lives may
also not want others to know about their thoughts
and experiences. Finally, participants may want to
express criticisms of services, their families and carers but, at the same time, wish to avoid jeopardising
relationships with people on whom they depend. MJ
will need to establish the level of assistance that individuals require in order to contribute their views and
experiences. In some instances, additional software
or hardware may be necessary to enable individuals
to use a computer independently.
What role might the REC play in enabling
MJ to address these ethical concerns?
The impact of email and the internet is still very new
and, consequently, there are as yet no definitive
guidelines for researchers [8]. Constructive dialogue
between researchers and REC members is, therefore,
essential in developing good practice and ethicallysound research. REC members may feel rather overwhelmed by the technicalities of conducting a project
of this kind and worry that they are not sufficiently
computer-literate to give an opinion. Such feelings
are reasonable but not altogether well-founded. The
REC members’ central focus is still the rights and well
being of the participants and the ethical issues inherent in the design. Participant information remains
crucial; it is not the format that matters but the content. Free and informed consent is essential; how it is
recorded, providing that some permanent format is
used, matters less.
Thus, from the REC members’ perspective, constructive dialogue is rooted in the principles of
research governance which remain the same, irrespective of the research design. In this instance, these
principles are to be applied flexibly and creatively.
Ethical issues in using the internet in research: commentary
REC members will need to have open minds, and a
willingness to engage with novel approaches whilst
bearing in mind that their advice and opinion will
carry weight for the future as a contribution towards
consensus on good practice in this type of research.
What concerns might the REC have about
data management in this proposed
research?
Data management will, in many respects, differ little
from that in other research projects. The nature of the
data to be collected, how they will be stored, who will
have access to them, how they will be used and
destroyed are routine topics for consideration in any
ethical review. The difference here is that MJ is planning to do a series of interviews in New Zealand and
then compare the outcomes with those conducted in
the UK. It is not clear whether this work is to run
concurrently with the UK project or as a later extension but the MJ her colleague will need to follow the
procedures for research governance that pertain in
New Zealand. Data collection and management in the
UK is governed by the Data Protection Act 1998.
Sharing data between researchers within the
European Union is fairly safe in that all member
states have to comply with regulations governing the
processing and movement of data [10](Directive
95/46/EC). New Zealand has had legislation about
privacy since 1993 and the Office of the Privacy
Commissioner [11] regularly produces guidance on
how data should be handled. In both countries REC
members may wish to satisfy themselves about the
119
ways in which data will be shared via the internet and
ensure that adequate arrangements are in place.
References
1. Egan J, Chenoweth L, McAuliffe D. Email-facilitated qualitative
interviews with traumatic brain injury survivors: a new accessible
method. Brain Injury 2006; 20(12): 1283-94.
2. Rodham K, Gavin J. The ethics of using the internet to collect
qualitative research data. Res Ethics Rev 2006; 2(3): 92-7.
3. Mann C, Stewart F. Internet communication and qualitative
research. London: Sage 2000.
4. McAuliffe D. Challenging methodological traditions: research by
email. The Qualitative Report 2003; 8(1): 57-69.
5. Egan J, Worrall L, Oxenham D. Accessible internet training package helps people with aphasia cross the digital divide. Aphasiology
2004; 18(3): 265-280.
6. Egan J, Worrall L, Oxenham D. An internet training intervention
for people with traumatic brain injury – barriers and outcomes.
Brain Injury 2005; 19(8): 555-568.
7. Beauchamp T, Childress J. Principles of biomedical ethics, 5th
edn. Oxford: Oxford University Press 2001.
8. Haigh C, Jones N. Techno-research and cyber-ethics: challenges for
ethics committees. Res Ethics Rev 2007; 3(3): 80-3.
9. Gryner A. The ethics of internet usage in health and personal narratives. Social Research Update; issue 49, Spring 2007. Department
of Sociology, University of Surrey Available at
http://sru.soc.surre.ac.uk/SRU49.html
10. Directive 95/46/EC of the European Parliament and of the Council
of 24 October 1995 on the protection of individuals with regard to
the processing of personal data and on the free movement of such
data available at
http://www.cdt.org/privacy/eudirective/EU_Directive_.html
11. Office of the Privacy Commissioner, New Zealand. At
http://www.privacy.org.nz.
The author has requested enhancement of the downloaded file. All in-text references underlined in blue are linked to publications on ResearchGate.
Information in practice
Ethical issues in qualitative research on internet
communities
Gunther Eysenbach, James E Till
The internet is the most comprehensive electronic
archive of written material representing our world and
peoples’ opinions, concerns, and desires. Physicians
who surf the internet for the first time are often
stunned by what they learn on websites set up by lay
people or patient self support communities. Material
on these venues can be a rich source for researchers
interested in understanding the experiences and views
of people and patients. Qualitative analysis of material
published and communicated on the internet can
serve to systematise and codify needs, values, concerns,
and preferences of consumers and professionals
relevant to health and health care. While the internet
makes people’s interactions uniquely accessible for
researchers and erases boundaries of time and
distance, such research raises new issues in research
ethics, particularly concerning informed consent and
privacy of research subjects, as the borders between
public and private spaces are sometimes blurred.
Internet communities
Internet communities provide a way for a group of peers
to communicate with each other. They include
discussion boards on websites, mailing lists, chat rooms,
or newsgroups. Examples of health related mailing lists
can easily be found by inserting a key word such as “cancer” in the search box at the Topica website (www.
topica.com/). One example is the Breast Cancer Mailing
List, based at Memorial University in Newfoundland
(www.bclist.org), which provides a forum for those seeking peer support and information, with an emphasis on
information on treatment and disease, practical information (such as relevant online resources), personal
experiences, and emotional support.
Qualitative research on the internet
Qualitative research seeks “to acknowledge the
existence of and study the interplay of multiple views
and voices—including, importantly, lay voices.”1 Internet postings are accessible for qualitative research of
these voices—for example, to determine information
needs and preferences of consumers or to investigate
how health related information can best be converted
into knowledge and disseminated widely.2
Three different types of internet based research
methods can be distinguished.3 One is passive analysis,
such as studies of information patterns on websites or
BMJ VOLUME 323
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Summary points
Internet communities (such as mailing lists, chat
rooms, newsgroups, or discussion boards on
websites) are rich sources of qualitative data for
health researchers
Qualitative analysis of internet postings may help
to systematise and codify needs, values, and
preferences of consumers and professionals
relevant to health and health care
Internet based research raises several ethical
questions, especially pertaining to privacy and
informed consent
Researchers and institutional review boards must
primarily consider whether research is intrusive
and has potential for harm, whether the venue is
perceived as “private” or “public” space, how
confidentiality can be protected, and whether and
how informed consent should be obtained
Unit for
Cybermedicine and
eHealth,
Department of
Clinical Social
Medicine,
University of
Heidelberg,
Bergheimer Str 58,
69115 Heidelberg,
Germany
Gunther Eysenbach
senior researcher
Joint Center for
Bioethics, University
of Toronto, Toronto,
Ontario M5G 2M9,
Canada
James E Till
professor emeritus
Correspondence to:
G Eysenbach
[email protected]
BMJ 2001;323:1103–5
interactions on discussion groups without the
researchers actually involving themselves. Examples
include the study of helping mechanisms and content
of online self help groups for colorectal cancer,4 breast
cancer,5 Alzheimer’s disease,6 and eating disorders.7
The second type of online research is through active
analysis, in which researchers participate in
communications—for example, to determine the accuracy of responses to healthcare questions on the
Usenet.8 In the third type researchers identify
themselves as such and gather information in the form
of online semistructured interviews, online focus
groups, or internet based surveys or use the internet to
recruit participants for “traditional” research.
Internet communities’ members do not
expect to be research subjects
There is increasing evidence that researchers posting
or “lurking” on such communities may be perceived as
intruders and may damage the communities. King
quotes a group member who, realising that the
community had been monitored by a researcher,
1103
Information in practice
retreated from a mailing list with the remark: “When I
joined this, I thought it would be a support group, not
a fishbowl for a bunch of guinea pigs. I certainly don’t
feel at this point that it is a safe environment, as a support group is supposed to be, and I will not open
myself up to be dissected by students or scientists.”9
One subscriber to the Breast Cancer Mailing List
responded to one of the frequent requests from
researchers interested in obtaining insights into patients’
personal experiences with breast cancer: “Why can’t
researchers do it the ‘hard way’ as they used to . . . and
leave us alone on the Breast-Cancer list?”10 Sharf
reported that among 14 people from a mailing list contacted to obtain informed consent, one woman was
“somewhat hostile, assuming that [the researcher] had
behaved voyeuristically, taking advantages of people in
distress” and that “the idea of using the conversations as
data had not occurred to many members.”11
We searched the Dejanews archive (http://
groups.google.com/) to find comments of newsgroup
participants responding to researchers’ requests. Entering the search terms “research survey project health”
identified 85 messages from researchers. By following
the message threads, we could find newsgroup
participants’ reactions, which were often negative.
Among the concerns expressed was that often “the
researcher isn’t familiar with newsgroup culture—
problems akin to those occasionally experienced by
anthropologists when they try to interpret the behaviour
of cultures they really don’t understand. And on the rare
occasions when I’ve seen someone who’s part of that
culture attempt to study the group he/she is part of, it
resulted in a rippling sense of resentment and betrayal
among those who find such things underhanded.”
Public spaces or private rooms?
Informed consent, privacy, and confidentiality are basic
ethical tenets of scientific research on people.12–14 To
determine whether informed consent is required, you
first have to decide whether postings on an internet
community are “private” or “public” communications.
This distinction is important because informed
consent is required “when behaviour of research
participants occurs in a private context where an individual can reasonably expect that no observation or
reporting is taking place.”15 On the other hand,
researchers “may conduct research in public places or
use publicly available information about individuals
(such as naturalistic observations in public places and
analysis of public records or archival research) without
obtaining consent,”15 and “research involving observation of participants in, for example, political rallies,
demonstrations or public meetings should not require
Research Ethics Board review since it can be expected
that the participants are seeking public visibility.”16
Although publication on the internet may have
parallels to publishing a letter in a newspaper or saying
something in a public meeting, there are important
psychological differences, and people participating in
an online discussion group cannot always be assumed
to be “seeking public visibility.” On the internet the
dichotomy of private and public sometimes may not be
appropriate, and communities may lie in between.
Several measures can be used to estimate the
perceived level of privacy. Firstly, if a subscription or
1104
some form of registration is required to gain access to a
discussion group then most of the subscribers are likely
to regard the group as a “private place” in cyberspace.17
Secondly, the number of (real or assumed) users of
a community determines how “public” the space is
perceived to be: a posting to a mailing list with 10 subscribers is different from a posting to a mailing list with
100 or 1000 subscribers. However, as messages sent to
mailing lists are sometimes also stored in web accessible archives, the actual number of people accessing
messages may be greater than assumed and may be
impossible to determine.
Thirdly, and perhaps most importantly, the perception of privacy depends on an individual group’s norms
and codes, target audience, and aim, often laid down in
the “frequently asked questions” or information files of
an internet community. For example, SickKids is a
discussion list for children who are ill. The information
file about the mailing list states that “adults will NOT be
permitted to participate on this list as its purpose is to
provide kids with their own personal place to share.” It
seems clear that children who send messages to this list
are unlikely to be “seeking public visibility.” Similarly, a
virtual self support group of sexual abuse survivors was
reported to have a group policy explicitly discouraging
interested professionals who were not sexual abuse survivors from joining the group,9 yet a decision was made
to analyse postings without obtaining prior or retrospective consent from the group members.18
Can informed consent be waived?
If it is thought that a community may be perceived to be
private, the next question is whether informed consent
for passively analysing the postings is needed or whether
this requirement can be waived. In clinical studies
non-intrusive research such as retrospective use of existing medical records may be conducted ethically without
the express consent of the individual subjects if the
material is anonymised at the earliest possible stage, if
there is no inconvenience or hazard to the subjects, and
if the institutional review board has reviewed and agreed
the research protocol.19 Similar considerations may be
applied to passive analysis of messages on mailing lists.
When considering potential hazards to group participants or the community as a whole, privacy issues are
especially important, and it should be considered
whether publication of the results (especially when mentioning the group name) may negatively affect group
members or harm the community as a whole. Much will
depend on what data will be collected and how they will
be reported, how vulnerable the community or sensitive
the topic is, and the degree to which the researcher
interacts with group members.
How can informed consent be obtained?
If a researcher and the institutional review board feel
that obtaining informed consent is necessary, how
should it be obtained? For mailing lists, there are basically two possibilities. The first is to send an email to the
mailing list describing the research prospectively and
giving participants the opportunity to withdraw from
the list. The second is to ask retrospectively each person
whose postings have been or will be used, giving them
the possibility to withdraw themselves from the analysis.
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Information in practice
The first approach is intrusive and can be done
only for those mailing lists or chat rooms where the
entry of new members can be monitored, so that they
can be briefed on the ongoing research. There is also a
considerable danger that announcing the research
may influence future communication patterns or
provoke many members to opt out (which may
damage the community). The second approach is
much less intrusive, can ensure that researchers
correctly interpret statements of participants, and may
even avoid false stories of personal illness being
analysed.20 However, this approach is cumbersome and
time consuming,11 especially as email addresses may be
no longer valid and many participants may not
respond.
Obtaining permission from the “list owner” (the
individual responsible for maintaining the mailing list)
or moderator (if any) is rarely an adequate way for a
researcher to obtain “community consent,” as neither
can properly claim to speak for all of the participants
in a mailing list. However, they may know the online
community better than the researcher, so they can be a
useful starting point to find out what the group norms
are and what would be the best way of obtaining
informed consent from group members.
Privacy and confidentiality
The internet holds various pitfalls for researchers, who
can easily and unintentionally violate the privacy of
individuals. For example, by quoting the exact words of
a newsgroup participant, a researcher may breach the
participant’s confidentiality even if the researcher
removes any personal information. This is because
powerful search engines such as Google can index
newsgroups (groups.google.com), so that the original
message, including the email address of the sender,
could be retrieved by anybody using the direct quote as
a query. Participants should therefore always be
approached to give their explicit consent to be quoted
verbatim and should be made aware that their email
address might be identifiable. Another reason why
researchers should contact individuals before quoting
them is that the author of the posting may not be seeking privacy but publicity, so that extensive quotes without attribution may be considered a misuse of another
person’s intellectual property.
Conclusions
The main problem with using internet communities
for research is that researchers may have difficulty
separating spaces regarded as private from spaces
regarded as public. We recommend that researchers
and institutional review boards should carefully
consider these points when developing and reviewing
research protocols and should involve members of the
group they want to study in these considerations (see
box). Our examples show how complex such
considerations may be, being further compounded by
our lack of knowledge about the psychological aspects
of cyberspace, the risks and benefits of internet based
research, and the technical complexities involved. Best
practice guidelines for internet research and compilations of case studies, from the perspective of both
researchers and internet communities, are needed.
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Proposed considerations for researchers and institutional review
boards before studying an internet community*
Intrusiveness—Discuss to what degree the research conducted is intrusive
(“passive” analysis of internet postings versus active involvement in the
community by participating in communications)
Perceived privacy—Discuss (preferably in consultation with members of the
community) the level of perceived privacy of the community (Is it a closed
group requiring registration? What is the membership size? What are the
group norms?)
Vulnerability—Discuss how vulnerable the community is: for example, a
mailing list for victims of sexual abuse or AIDS patients will be a highly
vulnerable community
Potential harm—As a result of the above considerations, discuss whether the
intrusion of the researcher or publication of results has the potential to
harm individuals or the community as a whole
Informed consent—Discuss whether informed consent is required or can be
waived (If it is required how will it be obtained?)
Confidentiality—How can the anonymity of participants be protected (if
verbatim quotes are given originators can be identified easily using search
engines, thus informed consent is always required)
Intellectual property rights—In some cases, participants may not seek
anonymity, but publicity, so that use of postings without attribution may not
be appropriate
*Researchers should explicitly address these issues in their research protocol
All authors of the quotes from newsgroups and mailing lists
have given their consent to quote them.
Contributors: Both authors contributed equally to this
manuscript.
Funding: JET’s contributions were partially supported by an
award from the National Cancer Institute of Canada.
Competing interests: None declared.
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