What are thewhen conducting in hospitals and clinics? By linking our with research, we face an interesting set of ethical issues that are not just an academic exercise: sensitivity of investigators; timing of being invited to participate in research; how to discuss secondary uses of samples collected for clinical care and primary research.
View People Matter, share it widely, and leave your comments!
After viewing People Matter,participants explored themes of
Equal access to health care and research– “How might individuals be feeling snubbed already by the medical complex by experiencing poor access and how might it be hypocritical to ask them to participate in research?”
forms of research -“It is important to stimulate the of patients, especially for non-English speakers. No patients ask questions, especially in an emergency situation. People just sign their [medical] consent which includes consent for using biological material for research.”
“Should we be equally concerned about the person who looks at a long consent form and just signs because they inherently trust their doctor, the institution AND the person who turns down research participation because the form is too long?”
As a group we explored using an organ donor card concept where people would carry a card indicating a checklist of the types of research they would and would NOT want to participate in. This approach to research participation would facilitate conversations between a person and their doctor/family at a time of their choosing instead of at a stressful time–in an emergency or at the time of care.
Participants offer positive feedback:
-Very excellent evening. The work you are doing is very helpful and healing. You should be very proud.
-I appreciated the tone of the conversations.
-I appreciate that you made me feel particularly welcome (as a non-scientist) at the community conversations!