By, Rebecca Burbidge and Alison Hall
Excerpt: In a systematic investigation of participants’ views on open consent, the Personal Genome Project has found that greater transparency about the risks and benefits associated with data sharing encourages, rather than deters, participation in human research.
The Personal Genome Project (PGP) aims to sequence the genomes of 100,000 volunteers and make their genetic and health data publicly available through online databases, in order to make new breakthroughs in the understanding and treatment of diseases.
A number of privacy concerns have been raised by the use of massive online databases for data sharing. Despite the use of a number of different techniques for disguising the identity of individuals within genomic data, research has shown that in some cases it is possible to uniquely identify these people within those data, often by linking unrelated datasets.