3.8 Review

Understanding the data-sharing debate in the context of Aotearoa/New Zealand: a narrative review on the perspectives of funders, publishers/journals, researchers, participants and Maori collectives

Journal

Publisher

ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD
DOI: 10.1080/1177083X.2021.1922465

Keywords

Confidentiality; research ethics; data-sharing; longitudinal research; data sovereignty

Funding

  1. Office of the Privacy Commissioner Te Mana Matapono Matatapu
  2. Health Research Council of New Zealand (HRC) Fellowship [18/644]

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This review outlines the current debates on the sharing of research data, focusing on its relevance for New Zealand. Researchers generally believe that the benefits of data transparency and progress outweigh any potential detriments of data-sharing. The review also highlights some considerations and challenges in data-sharing research.
This review outlines current debates about the sharing of research data, with a focus on relevance for Aotearoa/New Zealand. Recent years have seen increasingly frequent calls for public sharing of data from funders and publishers/journals in particular. Past research has suggested that researchers tend to agree that any detriments of data-sharing are outweighed by benefits for transparency and progress. We summarise trends across past research into perspectives of funders, publishers/journals, and researchers on data-sharing before raising three considerations. Firstly, past research on data-sharing has tended to overlook the potential implications of data-sharing for participants. We review the small body of research on participant perspectives. This research has conceptualised participants as a homogenous group without theorising how participants make sense of data-sharing. Secondly, perspectives on data-sharing vary depending on the methodology being applied, and we raise some specific considerations when data-sharing is proposed in long-term longitudinal research such as the Dunedin Study. Thirdly, Indigenous perspectives on data-sharing must be central to all research into data-sharing with any of the stakeholder groups, and we review existing research on data sovereignty in relation to data-sharing in Aotearoa/New Zealand and globally. We conclude by summarising a series of tensions between stakeholders in the data-sharing debate.

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