On March 12, 2013, PRIM&R hosted a webinar titled Online Research, Social Media, and the IRB: Assessing Ethics, Norms, and Risks. The presenters, Elizabeth Buchanan, PhD, and Joseph Konstan, PhD, answered many questions from the attendees during the lively question and answer period following this program. After the conclusion of the webinar, we asked Elizabeth and Joe to consider the remaining questions, and I’m pleased to share their answers with you today.
AS: Can you clarify what a crowdsourced dataset is, and provide examples, if possible?
EB & JK: Crowdsourcing is defined as “the practice of obtaining needed services, ideas, or content by soliciting contributions from a large group of people, and especially from an online community, rather than from traditional employees or suppliers.” It has been used in an array of research activities and one of the most well-known is the Mechanical Turk Workforce, which is a “marketplace for work that requires human intelligence.”
Specific concerns for institutional review boards (IRBs) include considerations of identification of workers’ privacy (usernames can be easily correlated with the individual’s Amazon account, among other things), incentives/payment to individuals (a typical payment is under $1.00), legal eligibility for participating in research activities, and jurisdictional issues.
Many examples of crowdsourced projects are listed here; some of these are not datasets but crowdsourced activities. In addition, the literature is full of fascinating discussion on crowdsourcing. Just a few examples include:
- Crowd-sourced data hold potential for positive change and human rights abuses (Scientific American)
- The Roar of the Crowd (The Economist)
- Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem (Journal of Medical Internet Research)
AS: What is the overarching approach to recruitment via research-specific Facebook pages or Twitter accounts? Is this generally allowed and what are the stipulations?
EB & JK: The Office of Human Research Protections (OHRP) considers subject recruitment part of informed consent; therefore, the recruitment plan must receive IRB review and approval prior to initiation. Many types of social media are used for recruitment, including: Twitter feeds, blog posts, YouTube videos, robocalls, and text messages. In terms of clinical trials website recruitment, OHRP offers the following guidance.
No IRB review is needed for descriptive information, such as:
- study title;
- purpose of the study;
- protocol summary;
- basic eligibility criteria;
- study site location(s); or
- how to contact the study site for further information.
IRB review is needed if additional information is provided, such as:
- description of research risks/potential benefits;
- solicitation of identifiable private information (e.g. eligibility survey); and
- incentives – monetary and non-monetary.
The IRB will review the recruitment plan, but not the actual web page. However, screen shots of the web pages may be helpful to the IRB, so it is good practice for researchers to provide them along with information from the forum or site that explains the “rules” or “practices” for recruiting participants and conducting research on the site. These are often found in FAQs or use/user agreements. In addition, the nature of social media could generate additional risks when they are used for recruitment, as individuals’ social media profiles may reveal that an individual visited a recruitment site. This is what we mean by the “greased and malleable” nature of social media data, specifically, if recruitment methods can identify individuals, researchers must consider potential harms downstream, and whether such risks are minimized.
AS: Can you suggest any “rules of conduct” or other resources that an IRB can make available to researchers interested in conducting internet research?
EB & JK: Some resources include:
- Association of Internet Researchers Ethics Guide
- University of Wisconsin – Stout IRB/HRPP Guidelines
- SACHRP meeting, March 2013 – Considerations and Recommendations Concerning Internet Research and Human Subjects Research Regulations
- Stanford Encyclopedia of Philosophy Internet Research Ethics
If you’re interested in learning more about this topic, but did not have a chance to participate in last week’s webinar, the archive is available for purchase.