Difference between revisions of "Case Studies/Genomes Unzipped"

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Data

2010

United States

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data, genome

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Overview

The Genomes Unzipped project is aimed to provide consumers with independent information about genetic testing, developments in the field of genetics, and the genetic testing industry. Genomes Unzipped consists of a group of volunteer researchers from the field of genetics and various legal and public health specialists in genomic technologies. These volunteers have opened their genetic data by releasing it into the public domain via the CC0 public domain dedication. Genomes Unzipped project data is available both as raw data and as part of a custom browser. Genetic data is directly linked to each person's identity, and includes other relevant information such as medical history, physiological characteristics, and other traits. The data may be used by anyone for any purpose without restrictions to the fullest extent allowable by law.

License Usage

Genotype data on Genomes Unzipped is waived into the public domain using the CC0 public domain dedication:

"To the extent possible under law, Genomes Unzipped has waived all copyright and related or neighboring rights to Genomes Unzipped genotype data."

All other content on the Genomes Unzipped website is licensed under CC BY-SA.

Motivations

The group has cited the following reasons for opening their data (under CC BY-SA):

"we want to share the results of scientific analysis of our own genomes, and as proponents of open data access most of us believe that doing good science means releasing complete data for others to investigate;

we hope that releasing our data publicly will help to guide useful discussions about genetic privacy and the benefits, risks and limitations of genetic information in general;

many of us believe that the ideal resource for genetic research is large open-access, non-anonymous research databases such as the Personal Genome Project, and that sharing linked genetic and trait information openly with the wider community is a public good – and we hope that our own experiences will encourage others to participate in open research projects;

we all believe that many of the fears expressed about the dangers of genetic information are exaggerated, and see this project as an opportunity to have a constructive public discussion about the truth behind these fears;

given the ease with which a dedicated snoop could obtain genetic information surreptitiously (via shed skin, hair or saliva, for instance), some of us argue that the whole notion of genetic privacy is illusory anyway – while releasing our data online makes it easier for people to get hold of it, this is a difference of degree rather than kind."

Impact

Since Genomes Unzipped adopted CC0 in September 2010, the impact of opening their data is yet to be determined. However, the group does hope several outcomes will result, specifically:

"By engaging in “public personal genomics” we hope to inform wider discussion about the benefits, risks and limitations of genetic testing, provide a test data-set for new tools developed (by us and others) for analysing genetic data, and to foster a diverse community of individuals interested in exploring their own genomes."

A number of factors were taken into account before volunteers contributed their genetic data.

Technical Details

See http://www.genomesunzipped.org/data for details on the different ways to access and download the data, including access to the project's API.

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