B. Rashmi Borah, Nicolle K. Strand, JD, MBioethics, and Kata L. Chillag, PhD
The Bioethics Commission’s recommendations to include research participants with impaired consent capacity provide an ethical foundation for neuroscience.
AMA J Ethics. 2016;18(12):1192-1198. doi:
10.1001/journalofethics.2016.18.12.nlit1-1612.
Instead of trying to reduce the number of people who have access to a patient's medical record by quarantining information, hospitals should explain the current meaning of confidentiality to patients as part of the informed consent process.
By privileging traditional research methods in forms for research protocol approval, IRBs can unknowingly allow community partners to be harmed in CBPR. Changes to the language can help ensure appropriate sensitivity and community involvement.
A mother of a prematurely born son reviews several quality-of-life research studies that highlight the disparity between self-reported quality of life and physician estimates of quality of life.
A bioethicist argues that two journal articles about quality of life-adjusted years research oversimplifies the issue and do not take into consideration people's abilities to adapt to disability and disease.
A health economics professor believes more research is needed on quality of life-adjusted years to explore the way we describe health states, the elicitation of patient values, and how to develop methods for obtaining informed general population preferences.
Elly A. Stolk, MSc and Floortje E. van Nooten, MSc
Two medical technology researchers argue that patients' own valuations of their health states may result in devaluation of interventions that can help them.