What We Don’t Know about How We Decide
| Date: | 2010 |
|---|---|
| Author(s): | Feudtner, C. |
| Source: | American Medical Association Journal of Ethics, 12(7), 586-589 |
| Label: | Ethics |
What ethical issues arise in the practice of pediatric palliative care that warrant empirical research? Typically questions about ethics and research involve aspects of protections for human research subjects, as codified in the United States, in the 1974 National Research Act, the 1979 publication of the Belmont Report, and the promulgation of the federal Common Rule, as first expressed in 1991 in the Code of Federal Regulations at entry 45 CFR 46 [1]. Based on these foundations, the three so-called pillars of protections have emerged to guide much of the discussion regarding ethically appropriate research practices: (1) review by a properly constituted ethics review committee or institutional review board; (2) meaningful evaluation of potential harms and potential benefits; and (3) meaningful informed consent. These protections are as important for pediatric palliative care research as they are elsewhere, and a recent article has highlighted some of the challenges that can complicate, and perhaps thwart, pediatric palliative care research in the course of safeguarding these protections [2].