Returning individual research results to participants guidance for a new research paradigm
"There is a long-standing tension in biomedical research arising from a conflict in core values--the desire to respect the interests and desires of research participants by communicating results contrasted with the responsibility to protect participants from uncertain, perhaps poorly validated...
| Autor principal: | |
|---|---|
| Autores Corporativos: | , , |
| Otros Autores: | |
| Formato: | Libro electrónico |
| Idioma: | Inglés |
| Publicado: |
Washington, D.C. :
National Academies Press
[2018]
|
| Materias: | |
| Ver en Biblioteca Universitat Ramon Llull: | https://discovery.url.edu/permalink/34CSUC_URL/1im36ta/alma991009622172106719 |
| Sumario: | "There is a long-standing tension in biomedical research arising from a conflict in core values--the desire to respect the interests and desires of research participants by communicating results contrasted with the responsibility to protect participants from uncertain, perhaps poorly validated information. Traditionally, the balance has been tipped toward the latter resulting in what has been termed "helicopter research." The notion here is that investigators drop into communities or people's lives, engage with them in often very personal ways, and then take off, never to be heard from again. Yet people are curious about themselves, particularly about their health and their family's health, leaving a sense of frustration and loss when investigators take but do not share"-- "When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research results--such as results with unknown validity--and the associated burdens on the research enterprise are competing considerations. Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholders--investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participants--and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations"-- |
|---|---|
| Descripción Física: | 1 online resource (399 pages) |
| ISBN: | 9780309475204 9780309475181 |
