Is it Ethical for Human Research Ethics Boards to Discourage Open Data?

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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).

————-

Sharing Data Ethically. (n.d.). Australian National Data Service. Government. Retrieved November 19, 2013, from http://www.ands.org.au/discovery/ethics.html

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 https://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

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4 comments on “Is it Ethical for Human Research Ethics Boards to Discourage Open Data?
  1. Will Monroe says:

    Rich, this is a really intriguing suggestion. I think it would make a very interesting extended blog post or article topic. What are the implications for study participants who have their data shared openly when the possible implications of that openness are changing so quickly? As much as I like this suggestion I can see how it could get very problematic for research purposes.

    Let’s suppose that this “open by default” status for research is the norm. Surely, study participants would still need to give their permission for their data to be collected and also shared in this way. Would they have any way to rescind that status? I think I’ve read some proposals about what it might be like to allow individuals the right to “reclaim” their data from social media sites and have it expunged. Would study participants also able to do this with research data? And if an individual could do this and remove it from the pool of data upon which conclusions were based, would those conclusions be less worthy than others since the results couldn’t be corroborated by others?

    Again, this is a fascinating suggestion and one that I would be very interested in reading about further, if you were so inclined.

  2. davidcoles99 says:

    You are asking an important question. It is extremely difficult for researchers if IRBs don’t spell out requirement clearly. It should be so simple. If tge data are TRULY anonymised (I.e. no way of linking them to an individual exists – including coding and there is no way of identifying an individual from the data) then any ethics ctte should accept that these data can be open.

    However if the data are not fully anonymised as above then of course consent for secondary use must be obtained from each individual participants – either at the time the original data are collected (can be a general consent for secondary use) or reconsented if a further use is subsequently identified. If a general consent is requested when tge data are collected then the participant should at least be given the opportunity to say if there sre any purposes for which they woild not want their data to be used.

    • Rich McCue says:

      I agree that things would be much easier for researchers if IRB’s would publish guidelines how how to anonymize data for different types of research. The anonymization process will add extra work for researchers, but the result of short term pain of extra work should be significant benefit to all future researchers in the field.

  3. Rich McCue says:

    Here is a very interesting blog post from the “Suffocated Science and Scholarship
    Research Ethics Committees, Institutional Review Boards, and the Crisis in Ethics Review”

    http://suffocatedscience.com/the-regulatory-slippery-slope/

    A quote: “Having a committee to review high-risk biomedical research seemed like an essential step in 1966. Once established, however, review boards found reasons to regulate low-risk research, and then no-risk research, as if they were genuinely hazardous, thus justifying an expansion of their jurisdiction to many kinds of research that the system’s founders would not have dreamed of regulating.”

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