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Big Data and Health Research—The Governance Challenges in a Mixed Data Economy

  • Symposium: Ethics and Epistemology of Big Data
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Abstract

Denmark is a society that has already moved towards Big Data and a Learning Health Care System. Data from routine healthcare has been registered centrally for years, there is a nationwide tissue bank, and there are numerous other available registries about education, employment, housing, pollution, etcetera. This has allowed Danish researchers to study the link between exposures, genetics and diseases in a large population. This use of public registries for scientific research has been relatively uncontroversial and has been supported by facilitative regulation that allows data to be used without the consent of data subjects. However, in the future much of the data will not be held by public authorities but by private companies. What are the implications of this shift for the governance of the research use of the data? This paper will argue that increased involvement of Research Ethics Committees and better training of researchers are necessary; and that some form of consent will have to be re-introduced. Four different consent models will be discussed: Opt-Out, Broad/Blanket consent, Dynamic consent, and Meta consent. It will be argued that a governance model including a possibility for citizens to make meta-choices strikes the best balance between individual and public interests.

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Notes

  1. By querying the registry at http://biobanks.dk/ you can get an initial estimate of how many samples are available from patients with a specific condition.

  2. Danish citizens have the second highest level of trust in their government and public institutions among the E.U. countries, only Finland having higher trust levels. Denmark is one of only seven E.U. countries where more than 50 per cent of citizens trust the government and public institutions (European Commission 2015, 68).

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Authors and Affiliations

  1. Centre for Social Ethics and Policy, School of Law, Williamson Building, University of Manchester, Manchester, M13 9PL, UK

    Søren Holm

  2. Centre for Applied Ethics and Philosophy of Science, Aalborg University Copenhagen, AC Meyers Vænge 15, S 2450, København, Denmark

    Thomas Ploug

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  1. Søren Holm
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  2. Thomas Ploug
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Correspondence to Søren Holm.

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Holm, S., Ploug, T. Big Data and Health Research—The Governance Challenges in a Mixed Data Economy. Bioethical Inquiry 14, 515–525 (2017). https://doi.org/10.1007/s11673-017-9810-0

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  • DOI: https://doi.org/10.1007/s11673-017-9810-0

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