July 3, 2019: New Article Describes the Public’s Beliefs Regarding Responsibility to Participate in Research

Findings from a new article suggest that the majority of patients do not feel a personal responsibility to participate in clinical research. In the article, Kevin Weinfurt, Li Lin, and Jeremy Sugarman report the results of a national survey of nearly 3000 people regarding their attitudes towards research responsibilities as well as their trust in doctors, healthcare systems, and medical research. Ethical frameworks for learning health systems have suggested that patients have a responsibility to contribute to learning activities, including research. The findings from this survey suggest that most patients in the U.S. do not currently endorse such a responsibility.

“These data provide a useful snapshot of the public’s views toward the obligation to participate in research. It is unclear how, if at all, these views will shift with increased efforts to create mature learning health systems. And if such views do not shift, it is uncertain what that would mean for the success of learning health systems.” —Kevin Weinfurt, PhD

Read the full article: Public Views Regarding the Responsibility of Patients, Clinicians, and Institutions to Participate in Research in the U.S.

For more on alternate approaches to consent, see the Living Textbook Chapter on Consent, Disclosure, and Non-Disclosure

2015 International Compilation of Human Research Standards Released


The 2015 edition of the International Compilation of Human Research Standards is now available. Compiled by the U.S. Department of Health and Human Service’s Office for Human Research Protections, the document indexes more than 1,000 laws, regulations, and guidelines governing human subjects research in over 100 countries.

The compilation includes direct links to many of the laws, regulations, and guidelines, and serves as a resource for researchers, institutional review boards (IRBs), research sponsors, and others involved in human subjects research worldwide.

The 2015 edition includes hundreds of updates, including the addition of six new countries (Ghana, Guinea, Liberia, Malaysia, Saudi Arabia, and Sierra Leone).

Access the 2015 compilation here

Content is organized in the following topics:
 1. General
 2. Drugs and Devices
 3. Research Injury
 4. Privacy/Data Protection
 5. Human Biological Materials
 6. Genetic
 7. Embryos, Stem Cells, and Cloning