Abstract
BackgroundA key ethical issue arising in data linkage research relates to consent requirements. Patients’ consent preferences in the context of health research have been explored but their consent preferences regarding data linkage specifically have been under-explored. In addition, the views on data linkage are often those of patient groups. As a result, little is known about lay people’s views and their preferences about consent requirements in the context of data linkage. This study explores lay people’s views and justifications regarding the acceptability of conducting data linkage research without obtaining consent.MethodsA qualitative study explored lay people’s views regarding consent requirements in data linkage via four hypothetical data linkage scenarios of increasing complexity. Prior to considering the scenarios, participants were provided with information regarding best practice data linkage processes via discussion and a diagrammatic representation of the process.ResultsLay people were able to understand the intricate processes involved in data linkage and the key protections afforded within a short amount of time. They were supportive of data linkage research and, on the whole, believed it should be conducted without consent provided a data linkage organization de-identifies the data used so that researchers do not handle identifiable data. Many thought that de-identified data holds a different status to identifiable data and should be used without specific consent in research that aims to benefit society. In weighing up conflicting values and interests, participants shifted consent preferences before arriving at their final consent preference for each scenario and provided justifications for their choices. They considered the protection of people’s information, societal benefits, and the nature and constraints of research and recognized that these need to be balanced.ConclusionsWith some exposure to the features of data linkage, lay people have the capacity to understand the processes sufficiently in order to consider ethical issues associated with consent preferences. Shifts in views reveal the complexity of such decisions. While privacy protection remained an important consideration for most participants, adequate protection measures adopted in best practice data linkage were viewed by most as protection enough for data linkage to proceed without specific individual consent.
Highlights
A key ethical issue arising in data linkage research relates to consent requirements
There are legislative requirements relating to the protection of information and researchers requesting the use of certain government datasets in Australia must provide a security plan outlining their organizational data protection requirements in addition to data protection methods researchers themselves devise to manage potential risks that might arise in data linkage activities [5]
The findings demonstrate the complexity of the decision-making process when people have the time and requisite understanding to revise their consent preferences
Summary
A key ethical issue arising in data linkage research relates to consent requirements. All interactions with the health care system generate individual files containing both personal and health information Collections of such data are used to facilitate the provision of healthcare and to enable the efficient and effective operation of healthcare systems. The key feature of best-practice data linkage processes involves separation of the various tasks required to achieve the linkage This results in no single third party entity ever having access to the fully identifiable dataset that each data custodian holds. In addition to this key feature of data linkage, there are stringent site-specific processes such as technical and physical protections of data. There are legislative requirements relating to the protection of information and researchers requesting the use of certain government datasets in Australia must provide a security plan outlining their organizational data protection requirements in addition to data protection methods researchers themselves devise to manage potential risks that might arise in data linkage activities [5]
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