On 28 January 2013, funders and researchers met to discuss how to enable rapid progress for biomedicine by lowering global barriers to responsible and secure data sharing [1].Since then, over 130 leading organizations in health care, research and disease advocacy, operating in 40 countries, have signed a letter of intent to work towards the creation of a Global Alliance for Genomics and Health (GA4GH) [2].There are three goals: to enable open standards for interoperability of technology platforms for managing and sharing genomic and clinical data, to provide guidelines and harmonized procedures for privacy and ethics internationally, and to engage stakeholders to encourage responsible sharing of data and of methods.After the mapping and sequencing of the human genome, today's challenge is the integration of genomics data with clinical data.However, interpretation of individual sequences for genomic medicine requires an evidence base of secure data sharing within a framework of core principles.The GA4GH core principles are as follows: respect -protecting secure data sharing and privacy preferences of participants; transparency -ensuring open governance and operations; accountability -promoting best practices in technology, ethics and outreach; inclusivitypartnering and building trust among stakeholders; collaboration -sharing information to advance human health; innovation -developing an ecosystem that accelerates progress; agility -acting swiftly to benefit those with disease.The vision of the GA4GH then is to promote and facilitate the exchange of extensive data on genomic sequences, including clinical annotations, to accelerate progress in genomic medicine, such as for cancer outcomes and targeted therapy, inherited pediatric diseases, other common non-communicable diseases, infectious diseases, and drug responses.In this short paper, we will focus on the international ethics harmonization challenges that the GA4GH faces.
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Bartha Maria Knoppers (2014) studied this question.