In light of recent developments in technologies such as whole genome sequencing and the increasing practice of exchanging samples and data between centres and across borders, the Council of Europe’s Committee on Bioethics is updating its 2006 Recommendation on ‘the use of biological materials of human origins in research’. In March, the Council issued a consultation document and asked for views on the proposed amendments. The Recommendation aims to protect the rights and privacy of individuals who give biological samples (like blood or skin) for research and gives guidance to researchers on storing and using the samples.
The <insert name of organisation> is a member of the Rare Disease Patient and Ethics Council which co-ordinated a collaborative response including: the RD Connect, Neuromics and Eurenomics projects; the Patient Advisory Council for those projects; the Interdisciplinary Scientific Committee of the International Rare Disease Research Consortium (IRDiRC); and Eurobiobank.
The response emphasised the importance of balancing individual citizens’ right to privacy and their right to receive medical treatment and benefit from prevention of disorders through the advancement of research. We emphasised the scarcity of biological materials within rare disease research and therefore the importance of being able to re-use samples for more than one research project, including making samples available across different countries and different disease groups.
Dr Pauline McCormack
Policy Ethics and Life Sciences (PEALS)
Newcastle University, Great Britain