Expert answer:Week 8 Short Paper: Ethics in Research Assignment
Expert answer:Read the following two cases: Ethical Issues in Using the Internet in Research—1 and Ethical Issues in Using the Internet in Research—2. 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 your text or other authoritative resources.To complete this assignment, review the Module Eight Short Paper Guidelines and Rubric document.
qso500_ethical_issues_in_using_the_internet_in_research_1.pdf
qso_500_module_eight_short_paper_guidelines_and_rubric.pdf
qso500_ethical_issues_in_using_the_internet_in_research_2.pdf
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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.
QSO 500 Module Eight Short Paper Guidelines and Rubric
Overview: For this short paper assignment, you will be analyzing ethical issues present in the provided cases. This assignment will assist you in developing your
final project, due in Module Nine.
Prompt: Read the following two cases: Ethical Issues in Using the Internet in Research—1 and Ethical Issues in Using the Internet in Research—2. 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.
Rubric
Guidelines for Submission: Your short paper must be submitted as a 2- to 3-page Microsoft Word document with double spacing, 12-point Times New Roman
font, one-inch margins, and at least three sources cited in APA format.
Critical Elements
Ethical Issues
Challenge
Proficient (100%)
Identifies ethical issues present in
the cases and explains what
makes each an ethical issue
Explains how each ethical issue
may pose a challenge in
conducting research
Compliance
Describes how one of the ethical
issues identified could be
addressed to comply with legal
and professional standards of
practice
Articulation of
Response
Submission has no major errors
related to citations, grammar,
spelling, syntax, or organization
Needs Improvement (75%)
Identifies ethical issues but does
not explain what makes each an
ethical issue
Explains how each ethical issue
may pose a challenge in
conducting research, but is
missing key points
Describes how one of the ethical
issues identified could be
addressed to comply with legal
and professional standards of
practice but is missing key
considerations
Submission has major errors
related to citations, grammar,
spelling, syntax, or organization
that negatively impact readability
and articulation of main ideas
Not Evident (0%)
Does not identify the ethical
issues present in the cases
Value
20
Does not explain how each
ethical issue may pose a
challenge in conducting research
35
Does not describe how one of the
ethical issues identified could be
addressed to comply with legal
and professional standards of
practice
35
Submission has critical errors
related to citations, grammar,
spelling, syntax, or organization
that prevent understanding of
ideas
Total
10
100%
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
10 NOVEMBER 2001
bmj.com
Summary points
Internet communities (such as mailing lists, chat
rooms, newsgroups, or discussion boards on
websites) are r …
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