Challenge
Scientists wanted to sequence and map all of the genes (known together as the genome) for the human species. The Human Genome Project was formed in order to facilitate understanding of the human genome, in hopes of applying this information to facilitate major scientific discoveries in the fields of medicine, biotechnology, and the life sciences. Traditionally, researchers have worked in labs behind closed doors, and findings were only shared in scientific journals, limiting their impact to only other academic scientists who had subscribed.
Solution
Researchers with the Human Genome Project agreed that all new information they produced should be made freely available online within 24 hours of discovery. In a pivotal way, for the first time, the public had unrestricted access to the findings and data as it was being discovered and shared.
Impact
In April 2003, the Human Genome Project was completed, presenting the world with the human genetic blueprint. Sequencing the human genome and making the data rapidly and broadly available led to a paradigm shift in the way science is conducted. The project created a living resource that provides the foundation for entire fields of cutting edge research, and paid deep dividends in a myriad of ways.
To date, the Human Genome Project has already:
- Generated $965 billion in economic output between 1988 and 2012, creating more than $293 billion in personal income through wages and benefits, and nearly 4 million jobs (directly and indirectly);
- Led to the development of a number of DNA screening tests that provide early identification of risk factors of developing diseases such as colon cancer and breast cancer;
- Helped develop new diagnostic tools and technologies capable of quickly identifying diseases and infections;
- Facilitated scientific understanding of the role of genes in specific diseases, such as cancer, cystic fibrosis, and diabetes, as well as the effect mutations have on the creation and evolution of disease; and,
- Identified possible genetic linkages to disorders like autism, which help medical professionals understand disease origin and treatment more thoroughly.
The project is widely regarded as a model for effective use of Open Data in the research process . The effort placed the groundbreaking information in the public domain and positioned the sharing of knowledge as a successful way of stimulating innovation. A study by MIT’s Heidi Williams found nearly 30% more genetic diagnostic tests emerged from sequenced genes that were always in the public domain, compared to genes that were temporarily withheld from the public with intellectual property rights after being sequenced by a private firm.
The Human Genome Project exemplifies the profound benefit Open Data can provide by empowering more people with different perspectives to build on the cutting edge—advancing research itself and speeding the translation of research into innovations that save lives and create new industries.
Thanks to Elliot Maxwell, a Bethesda, Maryland-based business, technology and public policy consultant on issues of openness; and Heidi Williams of MIT.