Human Rights and Biomedicine

Governance of technologies

Promoting dialogue amongst the public, practitioners, and policy makers to ensure that patient and public interest is a key priority in the development and regulation of genomic medicine

The future success of personalised medicine depends upon access to and sharing of exceptionally large amounts of genomic and other health data from patients and healthy individuals. The concept of solidarity recognises our common vulnerability to illness, and that we will all need healthcare at some point in our lives. Solidarity emphasises the willingness to accept certain potential costs (e.g. sharing our genetic data) in order to realise the common good, in this case better healthcare. Altruism and solidarity are intertwined with the principle of reciprocity. In agreeing to share genetic information, this gives rise to certain obligations on the part of researchers, healthcare professionals, and the state. These include providing information to data donors, including in relation to incidental findings, robust governance mechanisms, and equitable access to the treatments developed. In the interests of patients and the general public, the Steering Committee for Human Rights in the fields of Biomedicine and Health intends to promote a dialogue between the public, practitioners, and policy makers on how to incorporate the principle of reciprocity in the governance of genomic medicine.