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Table 2 Characteristics of selected genome projects. In opt-out consent process, consent is presumed (for clinical data and left-over hospital samples) with an opportunity to opt out. Opt-out is usually coupled with paper-based consent for individuals who want to volunteer samples at the biobank. In local access model, researchers are not allowed to download the data; they can only access it on the data holder’s site. – indicates missing information, Intra-country indicates that data is not allowed to leave the country (collaborations should be done through a local researcher)

From: The development of large-scale de-identified biomedical databases in the age of genomics—principles and challenges

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

  1. aThe number of biological specimens collected up to date
  2. bUpon participation in a research study, subjects may opt to receive notification about different genetic results that may be revealed