How to share data — not just equally, but equitably

Editorial in Nature: “Two decades ago, scientists asked more than 150,000 people living in Mexico City to provide medical data for research. Each participant gave time, blood and details of their medical history. For the researchers, who were based at the National Autonomous University of Mexico in Mexico City and the University of Oxford, UK, this was an opportunity to study a Latin American population for clues about factors contributing to disease and health. For the participants, it was a chance to contribute to science so that future generations might one day benefit from access to improved health care. Ultimately, the Mexico City Prospective Study was an exercise in trust — scientists were trusted with some of people’s most private information because they promised to use it responsibly.

Over the years, the researchers have repaid the communities through studies investigating the effects of tobacco and other risk factors on participants’ health. They have used the data to learn about the impact of diabetes on mortality rates, and they have found that rare forms of a gene called GPR75 lower the risk of obesity. And on 11 October, researchers added to the body of knowledge on the population’s ancestry.

But this project also has broader relevance — it can be seen as a model of trust and of how the power structures of science can be changed to benefit the communities closest to it.

Mexico’s population is genetically wealthy. With a complex history of migration and mixing of several populations, the country’s diverse genetic resources are valuable to the study of the genetic roots of diseases. Most genetic databases are stocked with data from people with European ancestry. If genomics is to genuinely benefit the global community — and especially under-represented groups — appropriately diverse data sets are needed. These will improve the accuracy of genetic tests, such as those for disease risk, and will make it easier to unearth potential drug targets by finding new genetic links to medical conditions…(More)”.