Showing posts with label human subjects. Show all posts
Showing posts with label human subjects. Show all posts

Monday, March 7, 2022

Opinion: Genomics’ Ethical Gray Areas Are Harming the Developing World; Undark, February 24, 2022

DYNA ROCHMYANINGSIH, Undark; Opinion: Genomics’ Ethical Gray Areas Are Harming the Developing World

"Various ethics guidelines on health-related research — including UNESCO’s International Declaration on Human Genetic Data and international ethical guidelines published by the Council for International Organizations of Medical Sciences, or CIOMS, in collaboration with the World Health Organization — advise researchers to seek approval from an ethics committee in the host country. Such reviews are critical, bioethicists say, because cultural and social considerations of research ethics might vary between countries. In low-resource countries especially, ethics reviews are essential to protect the interests of participants and ensure that data are used in ways that benefit local communities.

Nowhere in Larena and Jakobsson’s paper, or in any of the subsequent publications based on the Philippines study, does the Uppsala team mention obtaining such an ethics approval in the Philippines — and Philippines officials say they never granted the team such an approval."

Wednesday, April 13, 2016

Making the Most of Clinical Trial Data; New York Times, 4/12/16

Editorial Board, New York Times; Making the Most of Clinical Trial Data:
"Some researchers may oppose sharing data they have worked hard to gather, or worry that others will analyze it incorrectly. Creating opportunities for collaboration on subsequent analysis may help alleviate these concerns.
Of course, any data sharing must take patients’ privacy into account; patients must be informed before joining a clinical trial that their data may be shared and researchers must ensure that the data cannot be used to identify individuals.
By making data available and supporting analysis, foundations, research institutions and drug companies can increase the benefit of clinical trials and pave the way for new findings that could help patients."