Secondary Data Analysis: Ethical & Legal issues

1. Secondary Data Analysis: Ethical & Legal issues Dr. Ursula Kilkelly & Dr. Deirdre Horgan, OMCYA Keeping Children Safe Summer School, 17th September 2011, UCC.

2. Outline of Presentation • Introduction and context • Ethical and Legal issues of data re-use relevant at primary research stage • Ethical and Legal issues when re-using data (at re-use stage) • Some scenarios to consider • Concluding comments

3. Preliminary comments • Researchers are increasingly encouraged to locate, access and analyse data from data archives. • Data as a ‘global commodity’ (Parry & Mauthner, 2004) • Need to collaborate and share existing data. • Diminishing resources - can be a condition of funding. • Made possible by new information technologies • Case also needs to be made by researchers. • Relationship of primary to secondary use of data (eg can archived qualitative data be used to generate new substantive findings?)

4. Benefits of secondary analysis • ‘Data archiving by enabling generations of researchers to collaborate across times as well as across discipline and geography, is a key part of this culture of collaborative inquiry.’ (Bishop, 2005: 335)

5. Challenges of data re-use and archiving • No culture of data archiving in qualitative research. In fact, culture is to destroy data. • Because of the conditions under which qualitative data are produced, their reinterpretation at some later date can be viewed as problematic. • Relationship of trust – the construction of qualitative data is a joint endeavour between respondent & researcher, so both parties should retain ownership rights over the data?

6. Informed Consent • Principle of voluntary informed consent. • Informed consent can be complex - new technologies, ongoing nature of the research process and decisions post data collection to archive or re-use the data • Difficulty in obtaining consent which is truly informed - developmental nature of qualitative inquiry (James & Platzer, 1999) • Notion of consent as a ‘once only’ permission has been challenged by the increased realisation of the reflexive nature of research and resulted in calls for ongoing or ‘process consent’ (Lawton, 2001)

7. Informed consent • Little provision is made for this process in archiving. • ‘once the data are available as a secondary resource, the notion of process consent becomes redundant.’ (Parry & Mauthner,, 2004: 146) • Multiple and unknown uses to which an archived data set may be put. • Guarantees originally extended to participants may not obtain once control over the dataset is relinquished. • Right of withdrawal - must be extended to the data archive in view of the persistent accessibility and possible reuse of data in an archive.

8. Data Protection Rules • Fair obtaining and processing (consent) • Specified purpose • No disclosure (unless compatible use) • Safe and secure • Accurate, up to date • Relevant, not excessive • Retention period • Right of access

9. Rights and Obligations • Rights of data subject to control the use of their personal data (anything that can be linked to a living individual) • Obligations on data controllers (person who controls the contents and use of the data) and data processors (who processes personal data on behalf of a data controller) • Additional requirements relate to sensitive data (health, sexual life)

10. Data Protection Requirements • ‘Fair Processing’ requires that the research participant is informed about • The purpose of data collection • The persons or categories of persons to whom the data may be disclosed • Any other information that is necessary to ensure the processing is fair. • For re-use, research participants should know the identity of the person re-using the data and the categories of data being used • Unreasonable or disproportionate exception

11. Informed consent • Guidance from BSA/Data Protection Rules: • potential uses to which data might be put need to be discussed with research participants • restrict communication of records to audiences agreed with participants. (note IQDA) • Especially important with ‘vulnerable’ groups of research participants such as children – unable to fully appreciate immediate implications of participation or longer term implications of data archiving. • Danger of blanket/open consent.

12. Confidentiality • Particular problems in qualitative research because of the personal, detailed and in-depth nature of the data. • Obligations under the Data Protection Directive and Acts 1988, 2003: concerned only with personal data that relates to identifiable living individuals (person must be reasonably identifiable) • Anonymising data is the safeguard but removal of key identifying information, archiving incomplete data sets and falsifying non-essential information may compromise the integrity and quality of the data. (Parry, 1997)

13. Confidentiality • Researcher Anonymity: • Researcher revealing personal details can develop rapport, equalise the relationship and put participants at ease. • Knowing that data is to be archived may affect the choice of methodologies and how researchers interview (restrained, less forthcoming) and compromise the quality of the research. • Need to be aware of the impact on how data is collected when sharing later is an option.

14. Data Protection: secondary use • Personal data for secondary use: seems likely that data can be used for a secondary purpose which was not first considered (‘Research’) • As long as secondary use cannot cause harm or distress to the data subject and safeguards his/her rights • Results of the secondary research must not be identifiable.

15. Conflicting ethical requirements • Funding body - may require data be made available for archiving. • Research institution - ethical requirements often motivated by concern to avoid litigation. • Legal requirements. • Disciplinary sensitivities (Carusi & Jirotka, 2009)

16. Scenarios: • 1. Ethical/legal considerations when doing a piece of primary research • 2.Ethical/legal considerations when doing a piece of secondary research (reusing your own data) • 3.Ethical/legal considerations when doing a piece of secondary research (reusing others’ data)

17. Concluding comments • Guidelines and laws will not provide all the answers and only ever provide a framework within which these dilemmas can be resolved. REC approval essential part of this process.

18. Concluding comments • Disciplinary bodies, funding agencies and data depositories should: • Debate the practical, legal, ethical challenges and limitations of archiving and re-using qualitative data. • Draw on the example and experience of disciplines such as oral history to develop guidelines. • Incorporate archiving policies and practices as part of disciplinary training and socialisation for undergraduate and graduate students.

19. Reading • Parry, O. & Mauthner, N.S. ‘Whose Data Are They Anyway? Practical, Legal and Ethical Issues in Archiving Qualitative Research Data’ Sociology, 2004, 38 (1): 139-152, Sage. • Carusi, A. & Jirotka, M. ‘From data archive to ethical labyrinth’ Qualitative Research, 2009, 9 (3) 285-298. • Corti, L. & Thompson, P. ‘Secondary analysis of archived data’ Chapter 21 in Seale, C. (2004) Qualitative Research Practice, Sage. • Website of the Data Protection Commissioner (dataprotection.ie)