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Data Protection in Sociological Health Research: A Critical Narrative about the Challenges of a New Regulatory Landscape

Author

Listed:
  • Hélder Raposo

    (Lisbon School of Health Technology – Polytechnic Institute of Lisbon, Portugal)

  • Sara Melo

    (Higher Institute of Social Work of Oporto, Portugal)

  • Catarina Egreja

    (Centro de Investigação Interdisciplinar Egas Moniz (CiiEM), Instituto Universitário Egas Moniz (IUEM), Monte de Caparica, Portugal)

Abstract

The recent implementation of the General Data Protection Regulation (GDPR) establishes a set of formal requirements that reinforce personal data protection, namely, those concerning the collection, treatment, and dissemination of data on research participants. With the application of this new legal provision at the European level, new types of restrictions are emerging, whose nature and reach intensify the tension between demands for privacy and scientific freedom in research. In this article, we take as a reference an ongoing research taking place in Portugal, in the field of Sociology of Health, concerning the consumption of medicines by professionals exposed to high-performance pressure. Our main objective is to identify and analyse the implications of regulatory challenges faced in the research process and how the researchers managed and overcame them. We present a critical narrative that sheds light on the nature of the choices taken while also assessing the practical implications for the operationalisation of the research. We conclude by noting that, despite the benefits that may flow from the application of GDPR, the new requirements regarding the protection of personal data may override the ethical principles of scientific research and strengthen regulatory restrictions on conducting research. In the research concerned, the significant practical implications were indirect access to participants, a more time-consuming process in terms of participant adherence and a temporal discrepancy between the different stages of recruitment.

Suggested Citation

  • Hélder Raposo & Sara Melo & Catarina Egreja, 2022. "Data Protection in Sociological Health Research: A Critical Narrative about the Challenges of a New Regulatory Landscape," Sociological Research Online, , vol. 27(4), pages 1060-1076, December.
  • Handle: RePEc:sae:socres:v:27:y:2022:i:4:p:1060-1076
    DOI: 10.1177/13607804221107676
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    References listed on IDEAS

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    1. Carole Truman, 2003. "Ethics and the Ruling Relations of Research Production," Sociological Research Online, , vol. 8(1), pages 70-80, February.
    2. Kate Reed, 2007. "Bureaucracy and Beyond: The Impact of Ethics and Governance Procedures on Health Research in the Social Sciences," Sociological Research Online, , vol. 12(5), pages 80-84, September.
    3. Hoeyer, Klaus & Dahlager, Lisa & Lynöe, Niels, 2005. "Conflicting notions of research ethics: The mutually challenging traditions of social scientists and medical researchers," Social Science & Medicine, Elsevier, vol. 61(8), pages 1741-1749, October.
    4. Martyn Hammersley, 2010. "Creeping Ethical Regulation and the Strangling of Research," Sociological Research Online, , vol. 15(4), pages 123-125, November.
    5. Julie Kent & Emma Williamson & Trudy Goodenough & Richard Ashcroft, 2002. "Social Science Gets the Ethics Treatment: Research governance and ethical review," Sociological Research Online, , vol. 7(4), pages 1-15, November.
    6. Nathan Emmerich, 2016. "Reframing Research Ethics: Towards a Professional Ethics for the Social Sciences," Sociological Research Online, , vol. 21(4), pages 16-29, November.
    7. Kath Hennell & Mark Limmer & Maria Piacentini, 2020. "Ethical Dilemmas Using Social Media in Qualitative Social Research: A Case Study of Online Participant Observation," Sociological Research Online, , vol. 25(3), pages 473-489, September.
    8. Rose Wiles & Graham Crow & Vikki Charles & Sue Heath, 2007. "Informed Consent and the Research Process: Following Rules or Striking Balances?," Sociological Research Online, , vol. 12(2), pages 99-110, March.
    9. Margherita Vestoso, 2018. "The GDPR beyond Privacy: Data-Driven Challenges for Social Scientists, Legislators and Policy-Makers," Future Internet, MDPI, vol. 10(7), pages 1-11, July.
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