The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project

@article{MaxsonJones2018TheBT,
  title={The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project},
  author={Kathryn Maxson Jones and Rachel A. Ankeny and Robert M Cook-Deegan},
  journal={Journal of the history of biology},
  year={2018},
  volume={51},
  pages={693 - 805}
}
The Bermuda Principles for DNA sequence data sharing are an enduring legacy of the Human Genome Project (HGP). They were adopted by the HGP at a strategy meeting in Bermuda in February of 1996 and implemented in formal policies by early 1998, mandating daily release of HGP-funded DNA sequences into the public domain. The idea of daily sharing, we argue, emanated directly from strategies for large, goal-directed molecular biology projects first tested within the “community” of C. elegans… 

Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance.

TLDR
The Global Alliance for Genomics and Health was established to enable the data sharing that is essential for making meaning of genomic variation and data-sharing policies and practices will continue to evolve as researchers, health professionals, and individuals strive to construct a global medical and scientific information commons.

Globalizing Genomics: The Origins of the International Nucleotide Sequence Database Collaboration

TLDR
This paper describes the origins of the International Nucleotide Sequence Database Collaboration between GenBank in the United States, the European Molecular Biology Laboratory Databank, and the DNA Database of Japan.

Recipes for recombining DNA: A history of Molecular Cloning: A Laboratory Manual

TLDR
The origins of the Molecular Cloning: A Laboratory Manual, its publication history, its reception and its rivals are explored – as well as the more recent migration of such laboratory manuals to the Internet.

Viral Sovereignty or Sequence Etiquette? Asian Science, Open Data, and Knowledge Control in Global Virus Surveillance

Abstract On several occasions, the People’s Republic of China refused to share influenza viruses isolated on their territory with the World Health Organization pandemic flu surveillance system.

Association for Molecular Pathology v. Myriad Genetics: A Critical Reassessment

The Supreme Court’s 2013 decision in Association for Molecular Pathology v. Myriad Genetics is an essential piece of the Court’s recent quartet of patent eligibility decisions, which also includes

Building and sustaining collaborative platforms in genomics and biobanks for health innovation

Genomic and biobank collaborative platforms hold significant promise for the development of new discoveries and therapies. This paper explores the complex technical, legal and business challenges

Complicated legacies: The human genome at 20

Millions of people today have access to their personal genomic information. Direct-to-consumer services and integration with other “big data” increasingly commoditize what was rightly celebrated as a

Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life

The field of genomics has benefited greatly from its “openness” approach to data sharing. However, with the increasing volume of sequence information being created and stored and the growing number

Crowdfunding Conservation Science: Tracing the Participatory Dynamics of Native Parrot Genome Sequencing

Who gets to practice and participate in science? Research teams in Puerto Rico and New Zealand have each sequenced the genomes of parrot populations native to these locales: the iguaca and kākāpō,

References

SHOWING 1-10 OF 689 REFERENCES

Bermuda's Legacy: Policy, Patents and the Design of the Genome Commons

The multinational effort to sequence the human genome generated vast quantities of data about the genetic make-up of humans and other organisms. But, in some respects, even more remarkable than the

Statement on the rapid release of genomic DNA sequence.

TLDR
The attendees at the Third International Strategy Meeting on Human Genome Sequencing agreed unanimously to support the view that all publicly funded large-scale DNA sequencing projects, regardless of the organism, should deposit data immediately into the public domain, following the same guidelines that have previously been adopted by this group for human genomic sequence.

Genes, Railroads, and Regulations: Intellectual Property and the Public Interest

In 1988, in a report on the emerging Human Genome Project, the National Research Council called for keeping open the data the project would generate, declaring that “access to all sequences and

The Politics of Sequence: Data Sharing and the Open Source Software Movement

The Bermuda Principles (1996) have been celebrated as a landmark for data sharing and open science. However, the form that data sharing took in genomics was a result of specific technological

The code of codes: scientific and social issues in the human genome project

DANIEL J. KEVLES and LEROY HOOD (eds), The code of codes: scientific and social issues in the human genome project, Cambridge, Mass., and London, Harvard University Press, 1992, pp. x, 398, £23.95

Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance.

TLDR
The Global Alliance for Genomics and Health was established to enable the data sharing that is essential for making meaning of genomic variation and data-sharing policies and practices will continue to evolve as researchers, health professionals, and individuals strive to construct a global medical and scientific information commons.

A common language for physical mapping of the human genome.

TLDR
The polymerase chain reaction (PCR), a method that has only come into widespread use during the past 2 years, seems to offer a path toward a physical map that largely circumvents two problems that were prominent in the NRC Committee's discussions.

On the sequencing and assembly of the human genome

TLDR
Three laboratory leaders from the public consortium argue that Celera did not produce an independent sequence of the human genome or meaningfully demonstrate the whole-genome shotgun (WGS) technique.

New goals for the U.S. Human Genome Project: 1998-2003.

TLDR
A new plan, for 1998-2003, is presented, in which human DNA sequencing will be the major emphasis, and an ambitious schedule has been set to complete the full sequence by the end of 2003, 2 years ahead of previous projections.

Globalizing Genomics: The Origins of the International Nucleotide Sequence Database Collaboration

TLDR
This paper describes the origins of the International Nucleotide Sequence Database Collaboration between GenBank in the United States, the European Molecular Biology Laboratory Databank, and the DNA Database of Japan.
...