Genomics’ Ethical Gray Areas Are Harming the Developing World

“Formal ethics reviews are also crucial for ensuring that low-resource countries can freely and independently access data that might benefit the health and wellbeing of their people. Even genetic data obtained for purposes unrelated to health may later prove beneficial for medical purposes. More than 1,000 samples of genetic data collected in the Uppsala study are now stored in the European Genome-Phenome Archive, where a Data Access Committee now has sole power to determine who can use it for future studies — although one condition must be that such research is in accordance with consent provided by study participants. (The archive’s website doesn’t specify the members of the Data Access Committee assigned to the Philippines data set, but it lists Larena as the contact person.) There is no guarantee that research institutions in the Philippines will ever be able to make use of the largest human genetic dataset ever collected on its own soil.”

Bringing home the Pigafetta manuscripts

“This access can now be enjoyed by any Filipino for the first time because the NHCP has finally brought home high-resolution digital copies of all 4 Pigafetta extant manuscripts.

Some of these manuscripts have long been accessible online, but not in high resolution, a limitation for historians who want to see crucial details or for the government who may want to use blown-up images of the documents….”

An open data law for climate resilience and disaster risk reduction |

“This document aims to clarify the key elements of open data and to serve as a proposal to institute and strictly implement a policy for climate change and disaster risk reduction-related data and information based on its articulated and internationally accepted definition in the Philippines. The document describes the different considerations for the Philippines in its decision to fully adopt, support and promote a policy for open data for DRR. Defining the standards in an open data law will mandate compliance to the key elements of open data, which include: availability in digital format of data, downloadable via the internet in bulk for ease of use; amenability to intermixing with other datasets through an interoperable format structure and machine-readability of digital files; freedom to use, reuse and redistribute, even on commercial basis; and a ‘no conditions’ rule on the use of open data, except for appropriate citation for due credit.”