My colleagues and I recently conducted an online study with the objective of validating a new measure of professionalism in research. We wanted to obtain a convenience sample of 300 investigators and postdoctoral trainees who have been funded by the National Institutes of Health (NIH). We paid participants to complete an hourlong battery of tests and to provide demographic information.
Even with payments, we needed three months from our initial recruitment announcements to accrue 300 participants. After sending three requests to each potential participant and making follow up calls, we obtained a participation rate of approximately 15 percent, because participation was so time-intensive for busy investigators.
However, one requirement hindered our ability to attract even more participants with payments: To process the payments, we were required to collect participants' Social Security numbers (SSNs). Accordingly, our informed consent form notified participants that they would need to provide their SSNs in order to process payment. Further, the institutional review board (IRB) at my university required that our consent form disclose the risk that other people, including staff at federal agencies, might become aware of the respondents' participation in the study.
The reaction to the consent form was swift. Within one day, a potential participant contacted us to tell us that while our study was interesting and she would like to participate, she would not provide her SSN. Within one week, another participant contacted the IRB to complain that we required a SSN to process payments. This pattern continued throughout the study. At least four participants submitted incorrect SSNs, which required correction before payment could be processed, and 10 participants declined payment rather than provide their SSNs.
These study participants were not irrational in their concern. In the event of a breach of confidentiality, none of the information we collected could lead to harm as significant as abuse of their SSNs. This is why an increasing number of government agencies, financial institutions, and employers have discontinued the practice of using SSNs as identification numbers despite the convenience of doing so. Moreover, many people feel a strong sense of privacy regarding their financial matters; because SSNs are so closely tied to our financial lives, some people may have felt that the request crossed a boundary.
So how did we reach this situation? My IRB simply wanted to disclose all significant risks involved in participation — hence the consent form referenced SSNs and the possibilities that confidentiality might be breached or that a funding agency might wish to review study records. The university's tax office simply wanted to manage legal risk arising from Internal Revenue Service (IRS) rules pertaining to Form 1099-MISC, Miscellaneous Income. According to legal and accounting professionals, the IRS views research participation as a taxable event ("other income").
Institutions must issue 1099-MISC tax forms to people who receive $600 or more in a tax year. Accordingly, many institutions request SSNs for all payments greater than $10 per day to enable tracking of payments. For research participants who are non-resident aliens, payment procedures are more onerous, involving completion of Form 1042-S and mandatory withholdings. From the perspective of the IRS, providing gift cards is no different from cash or check payments. The administrative burden of such payments is significant: The survey study mentioned above required my institution to complete paperwork to create 300 "vendors" prior to mailing checks.
The policy of collecting SSNs can also make it difficult to recruit participants from certain groups or populations, such as undocumented immigrants or people who do not trust the ability of organizations to protect sensitive data. While this may not cause problems in some studies, in other studies it may prevent researchers from gathering socially important information.
How do institutions generally react to this tension between tax law, on the one hand, and respect for research participants and the quality of science, on the other? The answer is highly variable. My staff and I pulled policies for the payment of research participants from the websites of 30 research-intensive institutions and found that four of them required SSNs to be collected for all payments. At the other extreme, 13 institutions required SSNs to be collected only for payments of $600 or more. According to my discussions with tax advisors, variation is driven primarily by how institutions choose to balance the management of legal risk created by IRS rules with the protection of and respect for participants in research.
The fact that federal taxpayers subsidize major funders of research such as the NIH and National Science Foundation suggests that we as a society view research as contributing to the public good by improving health, education and technologies. If this is true, then it might make sense for the IRS to exempt payments for research participation from taxable events — at least when payment for any single study is under the IRS threshold of $600 a year. In the meantime, institutions will need to continue doing their best to balance compliance with federal tax law with concern for the protection and preferences of research participants.
James DuBois, DSc, PhD, is professor of medicine and director of the Center for Clinical Research Ethics at Washington University School of Medicine. He is a member of the APA Committee on Human Research.
