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Abstract

Data is powerful because it is used to tell stories – stories about people and the lives they lead. Data carries an appealing veneer of objectivity. But telling stories is never ethically neutral. Narratives always have embedded cultural values and ethical assumptions.

Data analytics and artificial intelligence are increasingly used to influence decisions about service delivery and access (in both the public and private sectors). In this talk I argue that the most vulnerable and marginalized citizens often rely on multiple government services, experience the greatest surveillance of their activities, and therefore have the most data produced about them. But conversely, they often have the least capacity to influence the narratives that are drawn with this data and the resulting policies.

To date, there has been significant discussion of data benefit sharing (ensuring the advantages/profits derived from the use of data are shared justly with the data providers and data subjects). I will discuss recent attempts, particularly in relation to indigenous data, to the move the debate from ‘benefit sharing’ towards ‘power sharing’. Power sharing requires a co-governance model where data subjects and communities have decision making capacity in relation to data governance and use. I will describe recent initiatives in New Zealand, and argue in favour of transparency, accountability and co-governance models for public sector data.

If you would like to attend, please e-mail Jane Beinart at jane.beinart@ethox.ox.ac.uk.

Forthcoming events

NDPH Special Seminar - Could cigarette smoking really protect against a few types of cancer?

Monday, 21 October 2019, 1pm to 2pm @ CEU meeting room, 3rd Floor, Richard Doll Building, Old Road Campus, OX3 7LF

Richard Doll Seminar - Chronic kidney disease of unknown cause: the epidemic you’ve never heard of

Tuesday, 22 October 2019, 1pm to 2pm @ Seminar rooms, BDI, Old Road Campus, OX3 7LF

UVBO Seminar - Nutrient timing and human health

Thursday, 24 October 2019, 1pm to 2pm @ School of Anthropology, 61 Banbury Road, OX2 6PE

NPEU Seminar - title TBC

Monday, 28 October 2019, 2pm to 3pm @ Seminar room 0, BDI, Old Road Campus, OX3 7LF

Richard Doll Seminar - Prostate cancer screening and treatment: what is the trial evidence and linked epidemiology?

Tuesday, 29 October 2019, 1pm to 2pm @ Seminar rooms, BDI, Old Road Campus, OX3 7LF

Health Services Research Unit Methods Group – Clinical Outcome Assessments: Content validity and meaningful change

Tuesday, 05 November 2019, 10.30am to 11.30am @ L1 Meeting room, Richard Doll Building, Old Road Campus, OX3 7LF