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

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

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?) Definite expectation now for future funding that we should be using these data sets and this is very prescriptive now in lots of ways

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) Ensures more rigorous scientific approach by facilitating transparency of research, allowing for the testing and checking of results and interpretations by other researchers. (Carusi & Jirotka, 2009: 285) Avoids repetition of research & wastage of resources by allowing existing research to be fully exploited through the secondary use of data. Ensures that sensitive topics or hard to reach populations are not over researched. (Fielding & Fielding, 2000)

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? Context important Power given to the original researchers in longitudinal studies in both holding onto the data but also shaping the research field for the next number of years.

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) Should participants be shown examples of similar archived data and attention drawn to possible uses to which the data could be put before giving consent? (Luff et al., 2002) Registration on archives in which their data concerning them is stored? Allowed to see & edit the material Informed consent has been interpreted/influenced from a medical orientation which can present difficulties for social scientific research in which we are more involved.

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. Beyond the power of the primary researchers to guarantee that future outputs from the data will be acceptable to the participants.

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

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)

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 The research participant (data subject) should know who is reusing the data and which data is being used but there is an exception where this would require unreasonable or disproportionate efforts (eg when a long time has passed).

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. Blanket or open consent – capturing all forms of data use - would appear to avoid having to revisit consent on reuse of data, but does it demean the notion of informed consent? Best to give a general idea of what may be involved and to get REC approval for this. Also, new EU Directive may make this problematic in the health sector.

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) Often researchers and participants are left to decide what is sensitive data. Some participants may not want to be anonymised as they want information about sexual preferences, household arrangements or political beliefs as having a political dimension which they want to be identified.

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.

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.

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)

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) Scenario 1: You have decided to undertake primary research (interviews with children for example) and think that this might have comparative value for other working in the area. What steps do you need to take to make provision for the legal and ethical issues in the event of the data being reused? Scenario 2: You undertook some empirical work five years ago not appreciating at the time that it might be useful to revisit it and use it later on. What steps do you need to take before you can reuse it? Scenario 3: You have come across a PhD in the library (or other empirical data) which you think it would be useful to use to compare with a study you have just completed. What are your considerations in advance of using this data?

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.

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.

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)