To aid readability, this course has specific references to just a subsection of over 100 articles consulted and referenced in the following two open access articles (Bull, Cheah, et al., 2015; Bull, Roberts, et al., 2015). Please visit the papers for a more comprehensive reference list or visit our resource centre for articles, policies and reports on data sharing, as well as links to data sharing platforms.

    1. Bull, S., Cheah, P. Y., Denny, S., Jao, I., Marsh, V., Merson, L., . . . Parker, M. (2015). Ethics and best practices for sharing individual-level health research data from low and middle income settings. Journal of Empirical Research on Human Research Ethics, 10(3), 302-313

    2. Bull, S., Roberts, N., & Parker, M. (2015). Stakeholder perspectives on sharing de-identified individual-level data from medical and public health research: a scoping review. Journal of Empirical Research on Human Research Ethics, 10(3), 225-238 

    3. Carter, P., Laurie, G. T., & Dixon-Woods, M. (2015). The social licence for research: why care.data ran into trouble. J Med Ethics, 41(5), 404-409. doi: 10.1136/medethics-2014-102374

    4. Cheah, P., Tangseefa, D., Somsaman, A., Chunsuttiwat, T., Nosten, F., Day, N., . . . Parker, M. (2015). Perceived benefits, harms and views about how to share data responsibly: a qualitative study of experiences with and attitudes towards data-sharing among research staff and community representatives in Thailand. Journal of Empirical Research on Human Research Ethics, 10(3), 278-289

    5. Denny, S. G., Silaigwana, B., Wassenaar, D., Bull, S. J., & Parker, M. (2015). Developing ethical practises for public health research data sharing in South Africa: The views and experiences from a diverse sample of research stakeholders. Journal of Empirical Research on Human Research Ethics, 10(3), 290-301

    6. Hate, K., Meherally, S., Shah More, N., Jayaraman, A., Bull, S., Parker, M., & Osrin, D. (2015). Sweat, skepticism and uncharted territory: A qualitative study of opinions on data sharing among public health researchers and research participants in Mumbai, India. Journal of Empirical Research on Human Research Ethics, 10(3), 239-250

    7. Jao, I., Kombe, F., Mwalukore, S., Bull, S., Parker, M., D, K., . . . Marsh, V. (2015). Involving research stakeholders in developing policy on sharing public health research data in Kenya: Views on fair process for informed consent, access oversight and community engagement. Journal of Empirical Research on Human Research Ethics, 10(3), 264-277

    8. Kirwan, J. R. (1997). Making original data from clinical studies available for alternative analysis. J Rheumatol, 24(5), 822-825.

    9. Merson, L., Phong, T., Nhan, L., Dung, N., Kinh, N., Ngan, T., . . . Bull, S. (2015). Trust, respect and reciprocity:  Informing culturally appropriate data sharing practice in Viet Nam. Journal of Empirical Research on Human Research Ethics, 10(3), 251-263

    10. Parker, M., & Bull, S. (2015). Sharing public health research data: towards the development of ethical data-sharing practice in low- and middle-income settings. Journal of Empirical Research on Human Research Ethics, 10(3), 217-224

    11. Rathi, V., Dzara, K., Gross, C. P., Hrynaszkiewicz, I., Joffe, S., Krumholz, H. M., . . . Ross, J. S. (2012). Sharing of clinical trial data among trialists: a cross sectional survey. BMJ, 345, e7570.

    12. Reidpath, D. D., & Allotey, P. A. (2001). Data sharing in medical research: an empirical investigation. Bioethics, 15(2), 125-134.

    13. Savage, C. J., & Vickers, A. J. (2009). Empirical study of data sharing by authors publishing in PLoS journals. PLoS ONE [Electronic Resource], 4(9), e7078.

    14. Simon, C. M., L'Heureux, J., Murray, J. C., Winokur, P., Weiner, G., Newbury, E., . . . Zimmerman, B. (2011). Active choice but not too active: public perspectives on biobank consent models. Genet Med, 13(9), 821-831. doi: 10.1097/GIM.0b013e31821d2f88

    15. Smith, C. T., Dwan, K., Altman, D. G., Clarke, M., Riley, R., & Williamson, P. R. (2014). Sharing individual participant data from clinical trials: An opinion survey regarding the establishment of a central repository. PLoS ONE, 9(5).