Research participants who discuss their research participation online may unintentionally disclose information that increases the risks of the research to themselves or others. These risks include unblinding study participants or the research team, communicating incorrect information, or inadvertently licensing participant behaviors that conflict with study requirements, each of which may potentially threaten study integrity and/or participant safety. Read more
When I started my research career back in 2004, I was working in the biggest trauma center in the Atlanta area, Grady Healthcare System. I had arrived in the country under a work visa to help with the Department of Orthopaedics' clinical trials. I remember the nervousness of speaking to potential study participants because I was not only new to clinical research, having only done chart review projects in the past, I was also new in America and America’s history of research with minorities. Now, after all these years working as a research coordinator and IRB professional, and living in the United States for more than 15 years, I know how important it is to rebuild trust and increase minority participation in research to ensure not only that we are doing quality studies, but also that we help in diminishing the social injustices our communities still undergo today. Read more
Three researchers at the Texas A&M University School of Public Health—Hye-Chung Kum, PhD; Alva O. Ferdinand, DrPH, JD; and Cason Schmit, JD—invite ethical, legal, and social implications (ELSI) experts to participate in a three-round Delphi study. The purpose of the study is to design an IRB application template for patient-centered comparative effectiveness research that requires record linkage. The researchers are currently seeking feedback on their prototype software, called Minimum Necessary Disclosure for Interactive Record Linkage (MINDFIRL), which is designed to mimimize identity disclosure via controlled information disclosure. Read more
If you have ever reviewed a research study as a member or administrator of an IRB that included or involved pregnant research participants, you may be eligible for a new study on the enrollment of pregnant women in clinical research. As a practicing obstetrician-gynecologist, bioethicist, and the study principal investigator, I hope you will consider participating in a 20 to 25 minute online survey on IRB views and experiences reviewing research involving pregnant women. Read more
Research partners”—that’s what scientists and doctors call people who serve as study subjects. Government officials and ethicists use the same term, depicting subjects as equal to the professionals who conduct and oversee health research. But there’s a problem with the egalitarian language. It simply isn’t accurate. Read more
