“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.”
Genomics’ Ethical Gray Areas Are Harming the Developing World
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