Title: ETHICS%20ASPECTS%20OF%20PROTECTING%20AND%20SHARING%20RESEARCH%20DATA:%20INFORMED%20CONSENT
1ETHICS ASPECTS OF PROTECTING AND SHARING RESEARCH
DATA INFORMED CONSENT
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......... RESEARCH DATA
MANAGEMENT TEAM UK DATA ARCHIVE UNIVERSITY OF
ESSEX ..
LOOKING AFTER YOUR RESEARCH DATA AN ESRC
ADVANCED TRAINING NETWORK COURSE UK DATA ARCHIVE,
COLCHESTER, 26-27 APRIL 2012
2TOPICS
- legal and ethical aspects of protecting, managing
and sharing research data obtained from people - policy contexts
- dealing with confidential research information
and personal data - informed consent
- developing agreements for obtaining informed
consent from participants - including consent for
data sharing -
3FOCUS
- research with people as participants/studied
subjects - confidential research data
- legal aspects
- ethical aspects
- managing and sharing data
- primary research data use
- data use in teams of researchers/institutions
- data reuse
- data publishing
- data archiving
4STAKEHOLDERS IN RESEARCH
- researchers
- participants
- funding agencies
- research ethics committees
- institutions
- government bodies
- archives/libraries
- wider research community
- public
- All play a role in how we deal with confidential
research data
5RESEARCHERS OBLIGATIONS
- duty of confidentiality towards informants and
participants - duty to protect participants from harm by not
disclosing sensitive information - duty to treat participants as rational,
autonomous beings, able to make their own
decisions on how the information they provide can
be used, shared and made public (through informed
consent) - duty to inform participants how information and
data obtained will be used, processed, shared,
disposed of, prior to obtaining consent - duty to wider society to make available resources
produced by researchers with public funds - e.g. data sharing required by research funders
-
6INTERNATIONAL POLICIES - DATA SHARING
- OECD, UNESCO, Committee on Data for Science and
Technology (CODATA) have policies that promote or
recommend data sharing (Ruusalepp 2008
www.jisc.ac.uk/media/documents/programmes/preserva
tion/data_sharing_report_main_findings_final.pdf
) - RCUK Common Principles on Data Policy
- Publicly funded research data are a public good,
produced in the public interest, which should be
made openly available with as few restrictions as
possible in a timely and responsible manner that
does not harm intellectual property. - RCUK recognises that there are legal, ethical and
commercial constraints on release of research
data. To ensure that the research process is not
damaged by inappropriate release of data,
research organisation policies and practices
should ensure that these are considered at all
stages in the research process. - www.rcuk.ac.uk/research/Pages/DataPolicy.aspx
- many international research funders have data
sharing policies www.sherpa.ac.uk/juliet/
7DATA PROTECTION ACT
- data privacy/protection of personal information
legislation - applies to personal information about living
individuals - anonymised data is not personal
8CONFIDENTIAL / SENSITIVE DATA
- confidential data data or information given in
confidence and data agreed to be kept
confidential (secret) between two parties that
are not in the public domain - e.g. information on business, income, health,
medical details, opinion - sensitive data
- e.g. data about an individual's race or ethnic
origin, political opinion, religious beliefs,
trade union membership, physical or mental
health, sex life, criminal proceedings or
convictions,...
9RESEARCH WITH CONFIDENTIAL DATA
- not all research data obtained from people are
personal data - do personal data or confidential data need to be
collected in research? - levels of confidentiality needed are research
related - e.g. oral history vs. community study
- take reasonable steps to protect identities
- avoid over-estimating confidentiality (no
paranoia)
10OPTIONS SHARING CONFIDENTIAL DATA
- Researchers to consider
- obtaining informed consent , also for data
sharing and preservation/curation - protecting identities e.g. anonymisation, not
collecting personal data - restricting/regulating access where needed (all
or part of data) e.g. by group, use, time period - securely storing personal or sensitive data
- Consider jointly and in dialogue with
participants - Plan early in research
11ETHICAL ARGUMENTS FOR ARCHIVING AND SHARING DATA
- store and protect data securely
- not burden over-researched, vulnerable groups
- make best use of hard-to-obtain data (e.g.
elites, socially excluded) - extend voices of participants
- provide greater research transparency
- enable fullest ethical use of rich data
- In each, ethical duties to participants, peers
and public may be present
12INFORMED CONSENT
- what does it mean for consent to be informed?
- purpose of the research
- what is involved in participation
- benefits and risks
- mechanism of withdrawal
- data uses primary research, storing,
processing, reuse, sharing, archiving, - strategies to ensure confidentiality of data
where this is relevant anonymisation, access
restrictions
13IS INFORMED CONSENT POSSIBLE FOR DATA REUSE?
- difficult if use strict interpretations of fully
informed and explicit - but there are other solutions
- general or enduring consent (in use in medical
research) - re-contact possible but can be costly
- archive data without consent?
- less sensitive data older data
14 INFORMED CONSENT PRACTICAL ASPECTS
15A GOOD CONSENT FORM
- Considers
- purpose of the research
- what is involved in participation
- benefits and risks
- mechanism of withdrawal
- usage of data for primary research and sharing
- strategies to ensure confidentiality of data
(anonymisation, access,.) where this is
relevant - Simple
- Avoids excessive warnings
- Complete for all purposes use, publishing,
sharing
16WHEN TO ASK FOR CONSENT
Pros Cons
One-off Simple Least hassle of participant Research outputs (even questions, not known in advance Participants will not know all content they will contribute
Pro-cess Most complete for assuring active consent Might not get consent needed before losing contact Repetitive, can annoy participant
17RIGHT TO WITHDRAW
- Right to withdraw one of key features of
consent - What about already collected data?
- not usually allowed (at least in most surveys)
- but most likely would be discussed
- What if project is longitudinal?
- Timescapes solution
- permit withdrawal, but
- explain to participants the cost to the project
of data that would be lost
18FORMAT FOR CONSENT
- Written
- more solid legal ground (participant agreed to
disclose confidential info) - not possible for some cases infirm, illegal
activities - can be perceived to be off-putting
- can help (or even be required) by Research
Ethics Committees - may offer more protection for researcher
- Verbal - with or without recording
- can be difficult to make all issues clear
verbally - possibly greater risks for researcher
- best if recorded
- Law is not specific
- written consent not used on surveys-implicit by
taking part - need to match format of consent with research
content
19TYPES OF MATERIAL
- Ranging from less sensitive (survey) to highly
sensitive (medical) - Most qualitative research falls in-between
- Text and transcripts
- Audio recordings, still and moving images
- data more likely to reveal identities
- data more likely to be rendered useless by
anonymising (distortion or blurring) - gaining consent or limiting access are better
alternatives than anonymisation
20SPECIAL CASES OF PARTICIPATION
- Children
- at what age can they give consent?
- parental consent
- Employees
- if using workplace for research
- employee may own duty of confidentiality to
employer - Vulnerable participants - need to balance
- protection from harm with
- right to participate
- Retrospective consent
- covert research, observational psychological
experiments - informed??
21RESOURCES
- British Sociological Association
www.britsoc.co.uk/equality/StatementEthicalPrac
tice.htm - British Sociological Association - Visual
Sociology Group Ethical guidelines
www.visualsociology.org.uk/about/ethical_statemen
t.php - Methodological Issues in Qualitative Data Sharing
and Archiving www.cardiff.ac.uk/socsi/hyper/QUADS
/index.html - National Centre for Research Methods - informed
consent project www. southampton.ac.uk/socsci/soc
iology/research/projects/informedcontent.html - Oral History Society guidelines
www.ohs.org.uk/ethics/ - Social Research Association www.the-sra.org.uk/et
hical.htm
22OUR DATA MANAGEMENT SERVICES
- UK Data Archive Research Data Management Support
Services - datasharing_at_data-archive.ac.uk
- Economic and Social Data Services
- www.esds.ac.uk/aandp/create
- RELU-Data Support service
- relu.data-archive.ac.uk
- ESRC Research Development Initiative Training
Programme - www.data-archive.ac.uk/create-manage/projects/rdi-
dm - JISC Data Management Planning project
- www.data-archive.ac.uk/create-manage/projects/jisc
-dmp
23CONTACT
UK DATA ARCHIVE UNIVERSITY OF
ESSEX WIVENHOE PARK COLCHESTER ESSEX CO4
3SQ ... T 44 (0)1206
872001 E datasharing_at_data-archive.ac.uk W
www.data-archive.ac.uk ...