Facilitate Open Science Training for European Research 
 
RESEARCH DATA MANAGEMENT AND OPEN DATA 
 
6-7 October 2015 
University of Manchester, UK 
 
 
IN PRACTICE – HANDLING AND 
SHARING RESEARCH DATA FROM 
HUMAN PARTICIPANTS 
Libby Bishop, UK Data Service 
 
Consent needed across the data life cycle 
 
• Engagement in the research process 
• decide who approves final versions of transcripts 
 
• Dissemination in presentations, publications, the web 
• decide who approves research outputs 
 
• Data sharing and archiving 
• consider future uses of data 
 
 Always dependent on the research context – special cases 
for covert research, verbal consent, etc.  
 
 
 
Timing and form of consent 
+ - 
One-off Simple 
Least hassle to 
participants 
Research outputs not known in 
advance 
Participants will not know all info they 
will contribute 
Process Ensures ‘active’ 
consent 
May not get all consent needed 
before losing contact 
Repetitive, can annoy participants 
 
 
Written More solid legal ground, e.g. participant has agreed to 
disclose confidential info 
Often required by Ethics Committees 
Offers more protection for researcher 
Not possible for some cases: infirm, illegal activities 
Verbal Can be difficult to make all issues clear verbally 
Possibly greater risks for researcher 
Best if recorded 
Aspects to consider 
• Different forms of consent for different materials, e.g. 
audio recordings vs transcripts 
• Right to withdraw – what to do with already collected 
data? 
• Simple, without omitting key issues (like sharing!) 
• Balancing of benefits and harms 
 
In practice: wording in consent form / 
information sheet – interviews, photos 
We expect to use your contributed information in various outputs, 
including a report and content for a website.  Extracts of interviews 
and some photographs may both be used.  We will get your 
permission before using a quote from you or a photograph of you.   
After the project has ended, we intend to archive the interviews at 
…. Then the interview data can be disseminated for reuse by other 
researchers, for research and learning purposes.  
 
The interviews will be archived at ……. and disseminated so 
other researchers can reuse this information for research and 
learning purposes: 
  I agree for the audio recording of my interview to be 
archived and disseminated for reuse 
  I agree for the transcript of my interview to be archived and 
disseminated for reuse 
  I agree for any photographs of me taken during interview to 
be archived and disseminated for reuse 
 
In practice: wording in consent form / 
information sheet –  
focus group 
ukdataservice.ac.uk/manage-data/legal-ethical/consent-data-sharing/consent-forms.aspx  
Any personal information 
that could identify you will 
be removed or changed 
before files are shared 
with other researchers or 
results are made public. 
In practice:  
wording in introductory letter– survey 
 
http://www.icpsr.umich.edu/icpsrweb/content/datamanage-ment/confientiality/conf-language.html 
 
Audio-visual data 
 Digital manipulation of audio and image files can remove personal 
identifiers 
 e.g. voice alteration, image blurring (e.g. of faces)  
 
 Labour intensive, expensive, may damage research potential of data 
 
Better: 
• obtain consent to use and share data unaltered for research 
purposes 
• avoid mentioning disclosing information during audio recordings 
Open about data with access restrictions 
• Publish / advertise: 
• Which data exist 
• Where data are kept, e.g. which repository 
• Who can access them 
• For which purpose 
• Under which conditions 
In practice: data with access conditions 
Health and Social Consequences of the Foot and Mouth Disease 
Epidemic in North Cumbria, 2001-2003 (study 5407 in UK Data Archive 
collection) by M. Mort, Lancaster University, Institute for Health 
Research. 
• Interviews (audio + transcript) and written diaries with 54 people 
• 40 interview and diary transcripts are archived and available for re-
use by registered users 
• 3 interviews and 5 diaries are embargoed until 2015 
• audio files archived and only available by permission from 
researchers 
 
discover.ukdataservice.ac.uk/catalogue/?sn=5407  
doc.ukdataservice.ac.uk/doc/5407/mrdoc/pdf/q5407userguide.pdf  
 
In practice: access conditions ReShare 
In practice: access conditions ReShare 
In practice: access conditions ReShare 
In practice: access conditions ICRAF 
dataverse