I’ve just finished filling out my Human Research Ethics application form (with many revisions to come I’m sure), and I can’t help but think that given how much talk there is about the need for more open research data, it seems to me that the Human Research Ethics Board (HREB) at UVic doesn’t encourage it.
This is my second application to the HREB (sometimes called Institutional Research Boards or IRB at other institutions) . The first I one completed was approved about four years ago, for a small survey of law students to find out what technologies they were using and bringing with them to school (McCue 2013). The data I collected was all anonymous, but the questions and language in the data retention portion of the HREB application form gave me the impression that if I wanted to expedite the application that I better not plan on making the data available to other researchers. So I didn’t, which is a shame, because it would have been allowed other researchers to compare and/or combine data from UVic Law students with the data from other law schools around the world. With larger data sets, stronger conclusion can often be drawn, and with open data this is done at no extra cost to researchers or society.
As I filled out the form this weekend, I checked the “Possibly” box, indicating that the data might be analyzed in the future by myself or others for purposes other than what was envisioned by my research project. Hopefully my fears are unfounded and the HREB doesn’t do anything to make me regret my decision. According to Alexander Halavais in his Nature article I may have cause for concern: “The time and expense of intensive ethics review of online social science puts the brakes on such work: both slowing down research and restricting the sharing of data” (2011).
It would be helpful if ethics boards took a different approach, and start with the assumption that the data, properly anonymized, will be shared. This would send a strong message to researchers that open anonymized data is the standard we are striving for. The Australian National Data service on their website encourages all HREB’s under their jurisdiction to do just that and more (n.d.). Australian HREB’s should:
- “Encourage data sharing”
- “Recognise that good data management involves careful data management planning”
- “Provide advice to researchers about designing their research so that the data can later be shared”
- “Add a question to your ethics form: ‘Is there any reason NOT to share the data from this project?’”
These are all excellent recommendations that should be seriously considered for adoption by HREB’s in Canada and around the world. If adopted, much time and money would be saved as less and less data gathering would be replicated over time.
In the case of medical research a strong argument could be made for properly anonymized open data being the most ethical approach to conducting research. The ability to analyze larger pools of clinical trial data for treatment efficacy and drug interactions would undoubtedly lead to more effective treatments and a higher standard of care for all of us (Ross 2012).
Halavais, A. (2011). Social science: Open up online research. Nature, 480(7376), 174–175. doi:10.1038/480174a
McCue, R. (2013, September). UVic Law Student Technology Survey 2013. Rich’s Random Thoughts. Personal. Retrieved November 19, 2013, from http://richmccue.com/2013/09/12/uvic-law-student-technology-survey-2013/
Ross, J. S., Lehman, R., & Gross, C. P. (2012). The Importance of Clinical Trial Data Sharing Toward More Open Science. Circulation: Cardiovascular Quality and Outcomes, 5(2), 238–240. doi:10.1161/CIRCOUTCOMES.112.965798