CHIP ME
Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives

Period
November 27, 2013 to November 26, 2017
Duration
48 months
Abstract

The falling cost of genome sequencing is making genetic information more easily accessible to the ordinary citizen. The proliferation of different actors in COST countries and beyond, engaging with the generation and interpretation of genetic data represents a tremendous opportunity but also a new challenge for society. The public health care system will increasingly be asked to provide interpretation and counselling relating to genetic information that has been generated privately and to satisfy the legitimate curiosity of participants in large-scale population genetic research. Existing ethical and regulatory frameworks may not be suitable to allow an efficient and ethical meeting of demand and supply of genetic knowledge and health, as well as a virtuous interaction between public and private actors. This Action aims to improve the state of the art by creating a community of researchers and stakeholders and linking existing initiatives which bring critical expertise in bioethics, social studies of science and technology, genetic technology, information and communication technology (ICT), stakeholder deliberation, and patient centred initiatives (PCI).

Outcomes

Peer-reviewed journals; working papers; one academic volume on ethics and the commercialization of genetic tests; policy briefs; reports; Chapters in textbooks and handbooks; Guidelines on biobank research ethics; Training-school; action website; annual workshops; Final Conference

Partners

Coordinator:
Elia Sputka, San Raffaele Scientific Institute, Università Vita-Salute San Raffaele, Milão (Itália).
Partners:
36 members (22 countries)

Researchers
Helena Machado
Keywords
sequenciação do genoma humano, saúde pública, perspetivas éticas, bioética
Funding Entity
European Cooperation in the field of Scientific and Technical Research