The Genomes Unzipped Project launched in June 2010 with the aim of informing discussion about direct-to-consumer genetic tests. In October 2010 we launched a new phase of the project: each Genomes Unzipped member has put our own genetic information in the public domain, directly connected to our own identities. Over time we plan to obtain and publish the results from a broad range of genetic tests, ultimately including complete genome sequencing.
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.
The principle of open access is very important to Genomes Unzipped, but we also realize that it presents us with a number of possible risks that require careful thought. We’ve each signed a detailed participant information document (PDF) which lays out these issues, including:
- Each of our DNA sequences will be partially or completely sequenced, and it will be made publicly available via the Genomes Unzipped website.
- Any information we choose to share with the project related to medical history, physiological characteristics or other traits will also be made publicly available.
- All of this information will be directly linked to our identities. Genomes Unzipped supports open data access, so there will be no attempt to treat this information confidentially, and this information will be available to anyone in the world with no effort at anonymisation.
- Our DNA sequences are related to our family members, so by disclosing our sequences we are also disclosing some information about our relatives.
- The legal ramifications (relating to employment, insurance, etc) of public disclosure of DNA sequence have not yet been fully established, and that discrimination or other negative consequences are possible.
- While each of us can withdraw at any time, there’s no way to recover the data after it’s been released to the world.
As the project evolves over time, so too will the relevant issues that we all must consider as participants in Genomes Unzipped and as public genomics community members. We expect this page, as well as the consent form, to evolve over time. If you have suggestions for how that should happen, please let us know.