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.
Fostering public dialogue to promote democratic governance and transparency in the field of biomedicine
In order to guarantee that the directions of innovation and the ethical challenges raised by technological developments are robustly deliberated, governance should go hand in hand with broad and informed public dialogue. Fostering a dialogue between the public, scientists, and policy makers should promote democratic governance and transparency in the field of biomedicine. This can assist policy makers in public consultations and, therefore, in ascertaining the most appropriate governance models needed for biomedical technologies and their applications. This is in line with Article 28 of the Oviedo Convention, which provides that “the fundamental questions raised by the developments of biology and medicine are the subject of appropriate public discussion in the light, in particular, of relevant medical, social, economic, ethical and legal implications, and that their possible application is made the subject of appropriate consultation”.