Accord Aims to Create Trove of Genetic Data
By Gina Kolata,
The New York Times
| 06. 05. 2013
More than 70 medical, research and advocacy organizations active in 41 countries and including the National Institutes of Health announced Wednesday that they had agreed to create an organized way to share genetic and clinical information. Their aim is to put the vast and growing trove of data on genetic variations and health into databases — with the consent of the study subjects — that would be open to researchers and doctors all over the world, not just to those who created them.
Millions more people are expected to get their genes decoded in coming years, and the fear is that this avalanche of genetic and clinical data about people and how they respond to treatments will be hopelessly fragmented and impede the advance of medical science. This ambitious effort hopes to standardize the data and
make them widely available.
“We are strong supporters of this global alliance,” said Dr. Francis Collins, director of the National Institutes of Health. “There is lots of momentum now, and we really do want to move quickly.”
In just the past few years...
Related Articles
By Nicholas Wade, The New York Times | 04.30.2026
“J. Craig Venter” via Wikimedia Commons licensed under CC by 2.5
J. Craig Venter, a scientist and entrepreneur who raced to decode the human genome, died on Wednesday in San Diego. He was 79.
His death was announced by...
By Susan Dominus, The New York Times Magazine | 04.27.2026
Why are babies born young? The most natural phenomenon on earth is actually hard to explain — at least on a cellular level. Consider this problem: The components of conception are old. When a woman gets pregnant, she has...
By Jonathan Basile, Los Ángeles Review of Books | 04.29.2026
WILLIAM BATESON, a foundational figure in the science of genetics at the turn of the last century, once recounted the response of a Scottish soldier to one of his public lectures: “Sir, what ye’re telling us is nothing but Scientific...
By Dr. Coco Newton, Progress Educational Trust | 03.30.2026
Have you ever wondered what it means to have dozens of half-siblings across the world – or to never know where half of your genetic identity comes from? A recent episode of Zembla explores the human consequences of the global...