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 Katie Hunt, CNN | 07.30.2025
Scientists are exploring ways to mimic the origins of human life without two fundamental components: sperm and egg.
They are coaxing clusters of stem cells – programmable cells that can transform into many different specialized cell types – to form...
By Rob Stein, NPR [cites CGS' Katie Hasson] | 08.06.2025
A Chinese scientist horrified the world in 2018 when he revealed he had secretly engineered the birth of the world's first gene-edited babies.
His work was reviled as reckless and unethical because, among other reasons, gene-editing was so new...
By Kristel Tjandra, Genetic Engineering & Biotechnology News | 07.30.2025
CRISPR has taken the bioengineering world by storm since its first introduction. From treating sickle cell diseases to creating disease-resistant crops, the technology continues to boast success on various fronts. But getting CRISPR experiments right in the lab isn’t simple...
By Susanna Smith, Genetic Frontiers | 07.28.2025
Key Topics
How does the American far right view genetics and genetic technologies?
What is the history of the American cultural pursuit of trying to choose smarter children? What has science shown us about the relationship of heredity and intelligence...