The 100,000 Genomes Project aims to sequence 100,000 whole genomes from around 75,000 participants by 2017. The project is recruiting NHS patients with common cancers, plus NHS patients with rare diseases and their families. Participation is voluntary, with participants giving informed consent for their whole genomes to be sequenced. Sir John Chisholm - Chair of Genomics England, the company established by the Government to carry out the project - says that participating patients will have the opportunity to benefit from clinical insights derived from the sequencing of their genome. But what are these benefits and insights? Participants will receive feedback from their clinician about their genome sequence, but it is by no means guaranteed that they will receive improved care. Many participants will not receive a diagnosis, but taking part in this project may provide their only hope. With UK Prime Minister David Cameron saying I believe we will be able to transform how devastating diseases are diagnosed and treated in the NHS and across the world, is there a danger that people will have unrealistic expectations? Could this create an unethical inducement to take part? The 100,000 Genomes Project is both a research project and a healthcare initiative. This gives the project unprecedented scope to link genetic data with treatment outcomes, but also poses a number of challenges. One such challenge is how best to deal with incidental findings - genomic discoveries with implications for the participants health, that are not pertinent to the condition that led to participation in the first place. Who should decide what is fed back to the participant? The 100,000 Genomes Project is currently in its pilot stage, but as it ramps up to capacity, these and other important issues must be addressed. Next weeks Progress Educational Trust/Genomics England event GENOMIC MEDICINE NEEDS YOU - DO YOU NEED GENOMIC MEDICINE? - taking place at the University of Oxfords Examination Schools on the evening of Thursday 16 October - will give you an opportunity to put questions and comments to Sir John Chisholm and others involved in the project, and to hear a range of contrasting views on the ethical and practical issues raised. The event is FREE to attend, but advance booking is required. Please email Sandy Starr at sstarr [at] progress [dot] org [dot] uk and hell add you to the attendee list.
Posted on: Mon, 06 Oct 2014 12:19:30 +0000
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