Course for Doctoral Students 
 
RESEARCH DATA MANAGEMENT AND OPEN DATA 
 
23rd July 2015, Social Science Data Arhives,  
Faculty of Social Sciences, University of Ljubljana 
ECPR Summer School 2015 
LEGAL AND ETHICAL ISSUES: 
OPEN ACCESS TO DATA IN 
RESEARCH WITH PEOPLE AS 
PARTICIPANTS  
Veerle Van den Eynden, UK Data Service 
  
 How to archive, share, re-use research data from 
‘human participants’ within ethical and legal 
boundaries?  
Discussion 
• What do you see as challenging aspects for research data 
from human participants ? 
Research with people as participants 
• Research data may contain personal data – data that allows 
living individuals to be identified 
• Legal: data protection / privacy legislation (data about living 
individuals) 
• Inform participants how personal data will be used, stored,…. 
• Store securely, avoid disclosure 
• Need consent from participant to share such data 
 
• Research data may contain confidential information - 
information given in confidence, agreed to be kept 
confidential (secret) between two parties 
• E.g. information on business, income, health, political opinion,… 
• Legal: duty of confidentiality 
• Ethical: do no harm 
• Need consent from participant to share such data 
 
 
 
Debate 
• Half of the audience: generate AS MANY reasons as you 
can for why researchers should share their data. 
• What are the benefits of sharing data? 
• Who does sharing data benefit? 
• How does it benefit them? 
• Other half of audience: generate AS MANY reasons as you 
can for why researchers should not share their data. 
• What are some of the downsides of sharing data? 
• What are some of the impediments to sharing data? 
• What are some of the concerns associated with sharing data? 
• Take about 6-8 minutes. 
• Then we’ll debate the issue!  
 
Tensions 
• Between protecting participants, researchers and 
institutional reputation 
    and 
• Maximising the value of research data collected from 
public funding 
 
• RECs/IRBs tendency to be risk averse, require data 
destructions etc.  
 
Ethical obligations and data sharing 
• Research with human participants usually requires 
ethical review (Research Ethics Committee) 
• Ethical conduct in research and protection of safety, 
rights and well-being of research participants – ‘do no 
harm’ 
• Data archives such as ADP, UK Data Archive,… facilitate 
ethical re-use of research data, protection of 
participants and safeguarding of personal data 
• data anonymisation 
• regulate data access 
• data sharing is NOT violation of data privacy or research ethics 
 
 Ethical arguments for archiving data 
• Not burden over-researched, vulnerable groups 
• Make best use of hard-to-obtain data, e.g. elites, 
socially excluded, over-researched people 
• Extend voices of participants 
• Provide greater research transparency 
• Enable fullest ethical use of rich data 
 
 
Best practice for legal compliance  
 
• Investigate early which laws apply to your data 
 
• Do not collect personal or sensitive data if not essential to 
your research 
 
• Seek advice from you research office 
 
• Plan early in research 
 
• If you must deal with personal or sensitive data 
 
• inform participants about how their data will be used 
 
• remember: not all research data are personal (e.g. 
anonymised data are not personal) 
 
 
 
 
 
 
Our advice to researchers 
 
• Do not collect personal or sensitive data if not essential to 
your research 
 
• Plan early in research 
 
• If you collect personal or sensitive data, inform 
participants how their data will be used 
 
• Not all research data are personal, e.g. anonymised data 
are not personal 
 
 
 
 
 
 
Options for sharing research data that may 
contain confidential information  
 
 
• Obtain informed consent, also for data sharing and 
preservation / curation 
 
• Protect identities e.g. anonymisation, not collecting 
personal data 
 
• Regulate access where needed (all or part of data) e.g. 
by group, use, time period 
 
 
 
Questions ? 
 
 
 
 
 
 
 
 
• Veerle Van den Eynden 
• veerle@essex.ac.uk