The goal of the Genomes Unzipped project is to provide genetic testing consumers with independent and informed analysis of developments in the field of genetics and the genetic testing industry. To better illustrate the uses and limitations of genetic information we have chosen to take an unusual approach: sharing our own genetic data publicly.
Who are we?
Members of Genomes Unzipped include active researchers in various fields of genetics, as well as specialists in the legal and public health issues surrounding new genomic technologies. Many of us have also been extensively involved in public communication about genetics.
You can see full profiles of group members here.
What are we doing?
Members of the group have had their DNA tested with a variety of products. We have released all of these genetic data openly to the public, both as raw data and in a custom genome browser. As the project proceeds we plan to obtain more genetic tests – up to and including whole genome sequencing – and to continue to release these data to the world.
The group is also performing analyses of our own raw genetic data to illustrate fundamental concepts in genetics, using software written both by group members and other collaborators; and we’ll be releasing the code for that software in our new code repository. As the project expands, we’ll be looking to add data from other volunteers to the project, as well as to collaborate with other “genome hackers” on the development of new tools for exploring genetic data.
Finally, we’re using our own experiences of genetic testing both to review the products currently on offer from genetic testing companies, and to illustrate the scientific and ethical challenges posed by new genetic testing technologies.
Why are we doing this?
Members of the group have chosen to participate for a variety of reasons, but there are some common threads:
- 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.
What about the risks?
Releasing genetic data to the public carries potential risks, including (but not limited to) implications for insurance, employment, and other discrimination against either Genomes Unzipped members or their relatives
Members of the group have considered the risks associated with the public release of genetic data, as laid out in the extensive participant information document, and have decided that on balance the societal benefits of participating outweigh the potential harms. All participants have been encouraged to discuss the risks of participation with their partners and first-degree relatives.
- The 23andMe and deCODEme kits used by Caroline Wright were generously donated by both companies to support ongoing work at the PHG Foundation on the evaluation and regulation of DTC genetic tests.
- The 23andMe kits used by Daniel MacArthur, Ilana Fisher, Luke Jostins, Kate Morley, Stephen Montgomery, Jan Aerts, Jeff Barrett, Carl Anderson, Vincent Plagnol, and Don Conrad were purchased through a 23andMe employee discount for US$100 each, and were paid for by each individual.
- The Counsyl kits used by Daniel MacArthur and Ilana Fisher were generously donated by the company.
- The 23andMe kits used by Dan Vorhaus and Joe Pickrell were purchased from the company at retail price by these individuals.
All content on the Genomes Unzipped website, except where otherwise specified, is licensed under the Creative Commons Attribution-ShareAlike 3.0 Unported (CC BY-SA 3.0), and thus requires attribution if reused. Genomes Unzipped project genetic data, however, is made available under Creative Commons CC0 Public Domain option, which operates as a waiver of all copyrights and related rights in those data, meaning those data can be used for any purpose without restriction.