Key findings from research into the perspectives of people who have
participated in research regarding their experience of participation
(e.g. experience of consent, confidentiality)
In 2008 the Social Research Association (SRA) and the Wellcome Trust jointly
sponsored a seminar, the purpose of which was to present the findings of 3
recent research projects which focused on:
i.
‘Research ethics from the perspective of research participants’
www.gsr.gov.uk/professional_guidance/ethics_in_gsr.asp
ii.
‘What children have felt about participating in survey research’
www.natcen.ac.uk/natcen/pages/publications/Children_Perspectives_on_Participatin
g.pdf
iii.
‘The attitudes of the public towards research governance’
www.wellcome.ac.uk/doc_WTX038446.html
At the seminar the SRA’s new Ethics Forum was also launched 1.
The University Research Ethics Committee is reviewing the content of existing
University research ethics guidance and forms that address the issues of consent
and confidentiality, in order to evaluate whether or not the guidance and forms
need to be modified in the light of these key findings. Researchers will be
alerted in advance to any changes that are made with respect to guidance and
forms.
The key findings are presented on the next pages
1
SRA Ethics Forum: The Ethics Forum is responding to a need for ongoing mentoring
support. The forum will operate in a virtual capacity – receiving requests for information
& advice by email. For further information contact Ron Iphofen, r.iphofen@bangor.ac.uk.
Anonymised case studies will be placed on the SRA website in due course.
1
i.
Key findings from the research project entitled:
‘Research ethics from the perspective of research participants’
(Jenny Graham, j.graham@natcen.ac.uk, tel. 0207 549 9542, National Centre
for Social Research (NatCen))
Weblink
to
full
report:
www.gsr.gov.uk/professional_guidance/ethics_in_gsr.asp
Purpose and methodology of the research:
To explore research participants’ ethical requirements in interview-based
studies. 50 people who had participated in previous NatCen studies were
followed up and asked about their views on the experience of participating
in research. In-depth interviews were undertaken, recorded and analysed.
KEY POINTS FROM RESEARCH FINDINGS ON PARTICIPANTS’ VIEWS:
a. Understanding of the concept of ethics was ‘constructed’ through
discussion initial varying familiarity about what the concept means –
‘respect’, ‘morality, integrity, probity’, ‘acting beyond selfinterest’, ‘following procedures’ – but the concept widened through
discussion;
b. Deciding whether or not to consent – Uneven patterns of absorption &
recall regarding what they had been invited to consent to (e.g. some had
forgotten the content of information sheets) – should researchers check
that participants have understood assumptions?
c. Scale of why people chose to participate (decision-making pathways):
i) Motivated by the study topic and/or process (thinking that they had the
potential to influence/inform/do good/sounds interesting/impressed by
how the researcher had found him/her). If a subject was not too personal,
political or commercial then there was less reluctance to participate;
ii) Absence of disinclination – i.e. I might as well participate!;
iii) Reassurance or persuasion was needed;
iv) A sense of compulsion or obligation – e.g. to be good citizens, social,
personal, ‘its about the Child Support Agency so I better
participate’
2
d. Range of information that participants wanted to receive in order to
make
an
informed
decision
on
whether
or
not
to
take
part:
Information needs included wanting information on the ‘questioning
style’ – i.e. some degree of surprise that some questions were ‘open’
or ‘closed’; and ‘what will happen to the data’ – researchers should
challenge assumptions/clarify points of concern
e. Interview interaction:
Participants particularly felt that it was important that their participation
was valued and that their views were respected
f.
Confidentiality:
Wide & varied understanding of the concept and confusion regarding the
concept of anonymity. Participants wanted to know from whom was
information to be kept private from – e.g. didn’t want relatives, friends,
government agencies etc. to know they had participated
Table summarising key issues from participants’ perspectives:
Before interview:
Unpressurised decision-making
During interview:
After interview:
Able to exercise right not to
Right to privacy & anonymity
answer or say more than
respected in storage, access
want to
& reporting
Research independent &
Unpressurised pace, time to
Unbiased & accurate
legitimate
think
research & reporting
Knowing why selected to be
Feeling comfortable, valued
Opportunity for feedback –
approached
& respected, not intimidated
findings & use
or judged
Objective & intended use clear
Opportunity for self-
Use made of social research
& worthwhile
expression
for wider benefit
Knowing what to expect
Questions relevant, not
repetitive, clear
Openness & honesty
Not left feeling negative
correcting misunderstandings
about participation
3
The key findings from the second study are on the next
pages
4
ii.
Key findings from the research project entitled:
What children have felt about participating in survey research
(Caroline Bryson, c.bryson@natcen.ac.uk, 0207 549 9539, NatCen)
Weblink to full report:
www.natcen.ac.uk/natcen/pages/publications/Children_Perspectives_on_Participatin
g.pdf
Purpose and methodology of the research:
An exploratory, small qualitative study about experience of participation in
questionnaire surveys – 8 focus groups (6 or 8 children in each) in 4 London
schools; ages 7 – 15; boys & girls.
KEY POINTS FROM RESEARCH FINDINGS ON CHILDRENS’ VIEWS (THAT
ARE
ADDITIONAL
TO
THE
POINTS
MADE
IN
THE
RESEARCH
ON
PARTICIPANTS’ VIEWS):
a. Decisions about whether or not to take part:
i)
WHO SHOULD HAVE A SAY AND WHY?
-
the rights of children as subjects vs parental rights of control/to
protect children from (perceived) risks;
-
about the age of consent – varied from as early as 11 up to 18 years
of age;
-
about where the research takes places – schools are perceived as
more the child’s terrain;
-
about the topic to be discussed;
-
should parents or children be approached first? (e.g. why bother the
parent if the child is going to opt out anyway.
ii) WHAT WOULD INFLUENCE YOUR DECISION TO PARTICIPATE?
-
the salience of the topic (interesting, knowledge of the topic – e.g.
concerned that if they don’t know enough they might provide the
wrong answer)
-
the value of the topic (potential to benefit children more widely)
-
beliefs about confidentiality – need precise information (how closely
will data be guarded)
-
feeling comfortable about the interviewer – knowing what s/he is like
in advance
-
do you have to take part?
5
-
Confidence & ’feeling special’ - researcher should explain how a
child has been selected & why
iii) WHAT INFORMATION DO YOU NEED TO DECIDE?
-
background about the survey
-
practical arrangements
-
what will happen to my answers?
b. Confidentiality:
- Is it ever acceptable to pass on someone’s answers?
- How do you decide when it’s acceptable or not?
- Need to state that confidentiality cannot be absolutely guaranteed – e.g.
duty to if a child is at ‘significant risk of harm’
- ‘WIDE’ VS ‘NARROW’ VIEWS REGARDING JUSTIFICATION FOR
BREACHING
CONFIDENTIALITY
(wider
interpretation
of
risk
than
researchers had expected):
- Wide: stealing (e.g. no big deal vs must report it otherwise this could
escalate to serious crime & prison); problems with schoolwork; bullying
- Narrow: should not disclose self-harm or parental abuse
KEY CONSIDERATIONS ON WHETHER OR NOT TO JUSTIFY A BREACH:
-
What
was
promised?
–
important
not
to
promise
absolute
confidentiality
-
Has child agreed to disclosure?
-
An ‘important’ issue?
-
Potential outcomes? – e.g. punishment, arrest
-
Alternatives to breaching confidentiality? – e.g. giving a helpline
number; giving advice (but is this ever appropriate?); providing
anonymous generic feedback
-
Veer on the cautious side regarding whether or not a topic is sensitive
or personal – e.g. a child’s interpretation may be different – e.g.
asking how many friends you have or asking information about a
family can be viewed as being very sensitive.
The key findings from the third study are on the next pages
6
iii.
Key findings from the research project entitled:
The attitudes of the public towards research governance
(Richard Shepherd, r.shepherd@surrey.ac.uk, University of Surrey)
Weblink to full report: www.wellcome.ac.uk/doc_WTX038446.html
Purpose and methodology of the research:
7/8 focus groups (9 people in each).
KEY POINTS FROM RESEARCH FINDINGS ON THE VIEWS OF THE PUBLIC
TOWARDS RESEARCH GOVERNANCE OF HEALTH CARE RESEARCH:
a. Overall, people wanted to know what the purpose of the research was,
the relevance of the data for achieving the purpose & who would access
the data;
b. Once data had been aggregated and anonymised didn’t consider data
to be personal;
c. Preference for anonymity to be irreversible unless a health problem was
discovered in which case it would be in the interests of the person for
his/her data to be reversible;
d. Unlikely to properly read information (e.g. in information sheets, letters,
scripts) – much better to explain a project verbally;
e. Providing greater information on a project does not mean that a
prospective participant is more likely to consent to participate;
f.
Bodies that regulate research (including URECs) are seen as remote – they
need to be more visibly grounded in issues that people can relate to;
g. Perception that people wouldn’t want to steal health records? (no
benefit);
h. GPs were seen as the most trusted mediators – people valued a personal
approach;
i.
Pharmaceutical companies were seen as professional;
j.
Seoondary data – some people were happy for information to be passed
on whilst others were very unhappy. ‘Opt in’ was seen as being on the
safe side whilst ‘opt out’ was seen as the ideal goal in the long-term.
Other key points raised at the seminar:
7
a. Enhanced ethical awareness is a research skill.
(analogy of a ‘minefield’ – i.e. I didn’t see it coming!)
b. People want to be ‘asked’ to give consent for their data to be used for
secondary purposes (concept of ‘data rape’).
c. Beneficial if University research ethics committees/panels/reviewers
interview the researchers as part of the ethical review process.
d. Participants should be viewed as genuine stakeholders – this can be
enhanced by treating consent as an ongoing process/pacing consent &
not as an event.
e. Do we want complicit, passive participants or active, potentially
recalcitrant participants?
f.
The SRA is going to provide training for researchers who wish to conduct
interviews.
Richard Hudson
Secretary to the UREC
May 2008
8