Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2015 Jul;10(3):278-89.
doi: 10.1177/1556264615592388.

Perceived Benefits, Harms, and Views About How to Share Data Responsibly: A Qualitative Study of Experiences With and Attitudes Toward Data Sharing Among Research Staff and Community Representatives in Thailand

Phaik Yeong Cheah  1 , Decha Tangseefa  2 , Aimatcha Somsaman  3 , Tri Chunsuttiwat  3 , François Nosten  4 , Nicholas P J Day  4 , Susan Bull  5 , Michael Parker  5
Affiliations

Perceived Benefits, Harms, and Views About How to Share Data Responsibly: A Qualitative Study of Experiences With and Attitudes Toward Data Sharing Among Research Staff and Community Representatives in Thailand

Phaik Yeong Cheah et al. J Empir Res Hum Res Ethics. 2015 Jul.

Abstract

The Thailand Major Overseas Programme coordinates large multi-center studies in tropical medicine and generates vast amounts of data. As the data sharing movement gains momentum, we wanted to understand attitudes and experiences of relevant stakeholders about what constitutes good data sharing practice. We conducted 15 interviews and three focus groups discussions involving 25 participants and found that they generally saw data sharing as something positive. Data sharing was viewed as a means to contribute to scientific progress and lead to better quality analysis, better use of resources, greater accountability, and more outputs. However, there were also important reservations including potential harms to research participants, their communities, and the researchers themselves. Given these concerns, several areas for discussion were identified: data standardization, appropriate consent models, and governance.

Keywords: Thailand; collaboration; consent; data sharing; research ethics.

PubMed Disclaimer

Conflict of interest statement

Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Ashley E. A., Dhorda M., Fairhurst R. M., Amaratunga C., Lim P., Suon S., . . . Tracking Resistance to Artemisinin, C. (2014). Spread of artemisinin resistance in Plasmodium falciparum malaria. New England Journal of Medicine, 371, 411-423. doi:10.1056/NEJMoa1314981 - DOI - PMC - PubMed
    1. Bull S., Roberts N., Parker M. (2015). Views of ethical best practices in sharing individual-level data from medical and public health research: A systematic scoping review. Journal of Empirical Research on Human Research Ethics, 10(3), 225-238. doi:10.1177/1556264615594767. - DOI - PMC - PubMed
    1. Denny S. G., Silaigwana B., Wassenaar D., Bull S., Parker M. (2015). Developing ethical practices 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. doi:10.1177/1556264615592386. - DOI - PMC - PubMed
    1. Dondorp A. M., Fanello C. I., Hendriksen I. C., Gomes E., Seni A., Chhaganlal K. D., . . . AQUAMAT Group. (2010). Artesunate versus quinine in the treatment of severe falciparum malaria in African children (AQUAMAT): An open-label, randomised trial. The Lancet, 376, 1647-1657. doi:10.1016/S0140-6736(10)61924-1 - DOI - PMC - PubMed
    1. Doshi P., Goodman S. N., Ioannidis J. P. A. (2013). Raw data from clinical trials: Within reach? Trends in Pharmacological Sciences, 34, 645-647. - PubMed

Publication types

LinkOut - more resources