Very few attempts have been made to survey patient opinions, particularly regarding the use of residual biospecimens and health information in research, to clarify their values. We conducted a questionnaire survey that targeted outpatients of a university hospital to gauge their awareness levels and understand patient perspectives on research that…

On the day that Henrietta Lacks died, researcher Dr. George Gey excitedly appeared on national television. He held a vial of her cells in his hand for the entire world to see and stated, "It is possible that, from a fundamental study such as this, we will be able to learn a way by which cancer can be completely wiped out." Once separated…

Background: The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and…