Projects | Declared target #genomes/exomes | #Genomes sequenced to date | Context | Start date | Data access model | Consent process | Notification of relevant data | De-identification process |
---|---|---|---|---|---|---|---|---|
Human Longevity | 1000,000 WGS | – | Research | 2013 | Controlled | paper based | Yes | Yes |
All of US | 1000,000 WGS | 0 | Research | 2017 | Multi-tier (open to controlled), based on risk of request | Dynamic consent | Yes | Yes |
Korean Genome Project | 1000 WGS for 2016 10,000 WGS for 2018 50,000,000 WGS for 2030 | 1722 | Research | 2012 | Open | – | – | Yes |
QGP | 300,000 WGS | 4000 | Research | 2013 | Controlled (multi-ethics/review boards) | Paper-based (11 simple questions) | Yes | Yes |
Estonian Genome Project | – | 52,000a samples | Research | 2000 | Controlled (multi-ethics/review boards | broad paper-based consent | Yes | Yes |
Saudi Human Genome Program | 100,000 WES | – | Research, diagnostic screening | 2013 | Controlled | Informed Paper based consent | Yes | Yes |
Decode Genetics | 300,000 WGS (with imputation) | 160,000 | Research | 1996 | Controlled (intra-country) | Opt-out/ paper-based consent | Yes | Yes |
The Faroe Genome Project | 50,000 WGS | – | Research | 2011 | Controlled (multi-ethics/review boards) | Informed consent (one for each research project) | Nob | Yes |
Genomics England | 100,000 | 52,065 | Research | 2015 | Controlled (access committee) | Paper-based | Yes | Yes, coupled with local access |