Genomic Medicine Policy

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Information about the initiatives was obtained from publically available sources. 

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What is the catalogue's Purpose?

In January 2014, the National Human Genome Research Institute and the Institute of Medicine of the U.S. National Academy of Sciences convened a symposium of global leaders in genomic medicine from the U.S. and 25 other countries. The symposium identified areas that would benefit from multinational collaboration such as evidence generation, workforce development and policy and regulatory issues[1]. 

In the policy and regulation space it was recommended that a useful next step would be a more systematic mapping of ongoing implementation projects worldwide and an inventory of available evidence and evidence-generation projects.

In the same year, the Italian Ministry of Health organised a meeting of the 28 Chief Medical Officers (CMO) of the EU member states, plus the CMO from Norway, at which the CMOs were invited to discuss the policy implications of health genomics. The results of that group’s activity also suggested a need for a coordinated effort to develop and harmonise policies across the EU[2].

This catalogue is an attempt at mapping different countries’ implementation projects and providing that information in a repository so it can be widely accessed and shared.

[1] Manolio TA, Abramowicz M, Al-Mulla F, Anderson W, Balling R, Berger AC, Bleyl S, Chakravarti A, Chantratita W, Chisholm RL et al: Global implementation of genomic medicine: We are not alone. Sci Transl Med 2015, 7(290):290ps213.

[2] Mazzucco W, Pastorino R, Lagerberg T, Colotto M, d'Andrea E, Marotta C, Marzuillo C, Villari P, Federici A, Ricciardi W et al: Current state of genomic policies in healthcare among EU member states: results of a survey of chief medical officers. Eur J Public Health 2016

For each entry (where available):

• Title & Description

• Type of activity

• Geographic Region

• Date

• Additional Details

• Policy Issues considered

• Website (for further information)

For the demonstration projects and population studies additional information has been included (where available):

• Cohort Size

• Cohort Description

• Type of Genomic Data

• Disease Areas