Navigating the complexities of research on human subjects in informal settings
Over the past decade, there has been increased interest in the details and depth of visitors’ experiences in informal educational settings. National Science Foundation (NSF) and other agencies have funded research projects studying visitors in museums, zoos, aquaria and parks. Evaluation studies, as well, now more often examine visitor behavior and attitudes, rather than just tracking traffic patterns and dwell times. Given these changes, issues around working with human subjects have become more salient, and people doing research in informal settings have struggled with defining appropriate procedures for human subject protection. This post is the first of a series in which CAISE will provide resources and an ongoing forum for the growing community of people who are doing research with human subjects in informal STEM learning environments.
Why Worry?
It’s important to start any discussion of human subjects protection with an awareness of the source and importance of the issues. Many cite the Tuskegee or Milgram1, 2 experiments as examples of (egregious) ethical violations, but I think the story of Henrietta Lacks is more relevant. Henrietta Lacks was a poor black tobacco farmer in Maryland whose tumor cells, which were harvested without her knowledge in 1951, became one of the most important tools in medicine, used for developing the polio vaccine and in vitro fertilization, among others. Henrietta’s cells have been bought and sold by the billions, yet she remained virtually unknown until the publication of The Immortal Life of Henrietta Lacks3 by Rebecca Skloot in 2010. Current human subjects regulations, laid out in the Belmont Report4 in the mid-1970’s, would have mandated that Henrietta Lacks be informed of possible uses for her cells and that she provide consent for such use. The three principles set forth in the Belmont Report are: Respect for Persons (including the principle of informed consent), Beneficence (maximizing benefits and minimizing risks), and Justice (fairly distributing costs and benefits).
Protecting Human Subjects in Informal Settings
When we think about research on human subjects in informal STEM education institutions like museums or zoos, we are first struck by how different these settings are from those for which the rules were written. The research we conduct does not put people at risk of bodily harm or long-term discomfort and there is hardly ever any profit to be made based on our research results! Research in informal settings isn’t risk-free, though. If we audio- or video-record people, we risk invading their privacy in ways that can be personally disrespectful. If we collect data that can be traced back to individuals, we also risk exposing them to scrutiny they would find unacceptable. Especially if we work with children, which most of us do, we must remember that their parents are the only ones who can decide what research they can participate in. These are not insurmountable issues, but problems often arise when those doing research in informal contexts need to have their data collection procedures approved by an Institutional Review Board (IRB). A major source of difficulty is that many IRBs, especially those at universities, have been organized to deal with high-risk medical procedures and such as have a perspective that is at odds with the opportunities and constraints of informal science education. While they are all working from the same general guidelines, IRBs have inconsistent and variable interpretations of these principles and sometimes a procedure that one IRB has approved is rejected by another. It’s not surprising, given these conditions, that many researchers in informal education contexts consider the need to negotiate human subjects issues and obtain IRB approval to be barriers to carrying out their work.
How CAISE Will Help
CAISE will publish a series of blog posts on navigating issues related to human subjects protection in informal STEM settings. These posts will be accompanied by an ongoing conversation in which contributors will be able to share approaches they have found to be useful and raise questions they are grappling with. The next posts will focus on:
- What counts as research? What makes research “exempt,” thus simplifying the IRB process?
- What are the latest advances in techniques for getting informed consent in an informal setting?
- What are some examples of IRB and informed consent procedures that might be transferrable to other, similar settings? We will post samples of completed, approved IRB applications, appropriately edited to protect the privacy of the human subjects in question. We will also post samples of approved consent forms.
- What are some IRB organizations, either university-based or private, who have a history of working well with researchers in informal settings? We will encourage contributors to share their contacts with others who are looking for an IRB to work with.
Is there a particular human subjects issue that you would like to see addressed in this blog? If so, let me know.
This post was contributed by Andee Rubin. Andee is a Senior Scientist at TERC, in Cambridge, Massachusetts. Are you interested in contributing to the Perspectives Blog? Contact us as caise@informalscience.org
1."The Tuskegee Syphilis Experiment," Person Education, accessed May 31, 2013, http://www.infoplease.com/ipa/A0762136.html
2. Josh Gutwill, "Ethical and practical solutions for evaluation studies: Protecting human subjects" (presentation at CAISE PI Summit July 26, 2008)
3. Rebecca Skloot, The Immortal Life of Henrietta Lacks (New York: Random House, 2010)
4. "The Belmont Report," The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, accessed May 31, 2013, http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html