CHIP ME
A Saúde do Cidadão através de iniciativas público-privadas: saúde pública, mercado e perspetivas éticas

Período
27 de novembro de 2013 a 26 de novembro de 2017
Duração
48 meses
Resumo

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).

Resultados

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

Parceiros

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

Investigadoras/es
Helena Machado
Palavras-Chave
genome sequencing, public health, ethical perspectives, bioethics
Financiamento
Cooperação Europeia no domínio da Investigação Científica e Técnica