By Mubashra Inam
Until 1990, most of the scientific research was limited to the research journals and was not easily accessible to other researchers as well public. Therefore, the progress in the scientific and technological work was slow. However, Human Genome Project (HGP) was a major breakthrough in the scientific world and is regarded as the pioneer of open access science even now.The idea underlying this international project was to determine the nucleotides base pairs of all the genes-collectively known as a genome- of the members of our species i.e., Homo sapiens and mapping these genes from the physical as well as functional standpoint. It is the world’s largest collaborative project in which more than twenty institutes and research centers of various countries were involved. Although the idea of this project was in talks since 1984 but this project was formally launched in 1990 and reached its completion in thirteen years. i.e., 2003.
One of the main objectives of HGP was to share all information with the scientific community thereby devising computer programs and tools for easy access of genome database. This aim was one of the significant points in the first draft of HGP that was presented in 1996 in the second HGP meeting held in Bermuda. In this meeting, British scientists, John Sulston and Bob Waterson, proposed the need of open access of scientific knowledge. According to them,
“The more available ‘out in the open’ scientific research is, the faster progress can be made to advanced understanding and to develop new medical treatments.”
Figure: Logo of the Human Genome Project(left) Data sharing principles of HGP, first draft, written by John Sulston, an acclaimed British biologist contributing in HGP, in the second HGP meeting, organized in Bermuda in 1996(right).
All the attendants agreed that the findings regarding human genome project will be made available for scientific research community as well as public.
Moving forward, two and half decades later, the field of genomics is bursting with data, all thanks to the advancement in genotyping and sequencing technology. Now, genetic readouts of millions of individuals are available in the data repositories worldwide. The Bermuda Principles of HGP were adopted by journals and funding agencies. It meant that the data should be accessible by anyone and can be used to promote progress and development. However, this explosion of data led different research and government organizations to make their own databases for handling sensitive and complex data, and had various rules of access. Although this field is generally viewed as generous compared to others, some repositories present barriers to access data. Still, there is no universal policy for data sharing and depositing by research groups.
A data sharing policy made by NIH is to be implemented by January 2023, which requires the researchers to put a Data Management and Sharing (DMS) plan into their research proposals. It should ensure that the data sharing is aligned with ethical and privacy considerations and with FAIR data principles (findable, accessible, interoperable and reusable). It is highly expected that new policies will guarantee to fulfill the promise that HGP made and scientific knowledge may prosper with the contributions of researchers and all the people there in the scientific realm.
“It does not mean, I threw my data over a wall and hope someone caught it.”
(Carolyn Hutter,
Director of National Human Genome Research Institute
(NHGRI)’s Division of Genomic Sciences)
