Paying Research Subjects: A Survey of Current Policies

Summaries for Patients are a service provided by Annals to help patients better understand the complicated and often mystifying language of modern medicine.

Summaries for Patients are presented for informational purposes only. These summaries are not a substitute for advice from your own medical provider. If you have questions about this material, or need medical advice about your own health or situation, please contact your physician. The summaries may be reproduced for not-for-profit educational purposes only. Any other uses must be approved by the American College of Physicians–American Society of Internal Medicine.

The summary below is from the full report titled "Paying Research Subjects: An Analysis of Current Policies." It is in the 5 March 2002 issue of Annals of Internal Medicine (volume 136, pages 368-373). The authors are N Dickert, E Emanuel, and C Grady.

What is the problem and what is known about it so far?

Research organizations, such as universities and drug companies, sometimes pay people who participate in health-related research studies. People disagree about whether it is right to pay research subjects. Some worry that large payments might entice people to participate in research that without payment they would consider too risky. There are no clear rules about when to pay research subjects or how much it is appropriate to pay, so each research organization must create its own rules. Research organizations might benefit from knowing how others decide about paying research subjects.

Why did the researchers do this particular study?

To learn about research organizations' rules and policies for paying research subjects.

Who was studied?

The study included 32 organizations involved in health-related research: 9 universities, 7 large drug companies, 8 contract research organizations, and 8 independent institutional review boards. Contract research organizations are groups that collect data for research initiated by other parties, mostly drug companies. Institutional review boards review research proposals before research begins to decide whether the research plan is ethical.

How was the study done?

The researchers contacted a leader at each of the organizations in 1998 or 1999, described the study, and asked for permission to include the organization in the study. They asked each of the leaders to provide information about how often the organization paid research subjects and about the organization's policies or guidelines for deciding about payment.

What did the researchers find?

Of the 32 organizations, 30 reported that they had paid subjects in at least one study approved during 1997. One organization reported no paid studies, and another did not know whether any subjects had received payment. Only a few organizations knew precisely how many studies offered payment to subjects. Only approximately one third of the organizations said that they had written rules to guide payment of research subjects. The organizations reported a wide variety of methods for deciding when to pay and how to pay. Often, the organizations left it up to the researchers or the institutional review board to decide about payment. It was common for organizations to require researchers to spread the payments out over the course of the study and to include information about payment on the forms that patients signed when they agreed to participate in the study.

What were the limitations of the study?

The 32 organizations may not be typical of many other research organizations in the United States. It is possible that organizations that had no policies at the time of the study (1997 to 1999) have since developed them.

What are the implications of the study?

Although most research organizations pay research subjects, few have written rules to guide payment. Written rules might help to make payment more consistent.