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How did the Human Genome Project make science more accessible?

The Human Genome Project was a pioneer for encouraging open access to scientific research. In 1996, those involved agreed that all new information produced should be made freely available to all within 24 hours.

Open access stands for unrestricted access and reuse. It is the process by which research data from scientific studies is made freely available to all on the internet.

The Human Genome Project is widely regarded as a model for open access science.

Before the Human Genome Project, scientists had only ever shared their research findings in scientific journals.

Agreements made during the Human Genome Project to encourage the free distribution of research data acted as a groundbreaking step for scientific research. Before the project, scientists had only ever shared their research findings in scientific journals. However, by the end of the project scientists were willingly sharing their findings with each other, as well as the public, long before publication.

The need for such an agreement was realised after Myriad Genetics decided to patent the breast cancer gene BRCA2 and remove the rights from other scientists to profit from carrying out research on the gene. Two key scientists, John Sulston and Bob Waterston, felt that it was important to generate some "ground rules". They wanted to reach a firm agreement about how information generated by the Human Genome Project, should be handled and distributed.

John and Bob had worked together to sequence the genome of the nematode worm C. elegans. Throughout this project they made it their priority to release all of their findings as they were produced so that they were freely available for all to see. This approach formed the foundations for the release of data and open access for the Human Genome Project. Both scientists believed that the more available and "out-in-the-open" scientific research was, the faster progress could be made to advance understanding and develop new medical treatments.

 

John Sulston discusses the importance of sharing genome sequence data to enable scientific progress.

The Bermuda meeting gave scientists from around the world a unique opportunity to compare notes and combine methods and strategies.

As a result, in February 1996, they organised an ‘International Strategy Meeting’. This meeting in Bermuda gave scientists from around the world a unique opportunity to compare notes and combine methods and strategies for the Human Genome Project. They decided on three key principles about data access for the project to follow. These became known as the Bermuda Agreement:

  1. All parts of the human genome sequenced during the Human Genome Project should be distributed into the public domain.
  2. DNA sequences had to be released rapidly into the public domain within 24 hours of completion.
  3. Sequencing centres should inform the Human Genome Organisation (HUGO) of their intentions to sequence certain regions of the genome so that they could present the information online.

Everyone at the meeting agreed that no one should take intellectual property rights over the data produced during the project. They hoped that the result would be to speed up the progress of sequencing the human genome and maximise the public benefits of the Human Genome Project by enabling scientists to perform more detailed research on human health and disease.

This page was last updated on 2016-06-13