This week at the Progress Educational Trust (24 February 2015)
This week, the Progress Educational Trust (PET) continues its work on mitochondrial donation, ahead of a crucial vote on the issue in the House of Lords. PET Director Sarah Norcross discusses the Lords vote, and the packed public debate on mitochondrial donation that PET organised in the Houses of Parliament earlier this month, in her article 'Mitochondrial donation, Peers and the public' (published in PET's flagship publication BioNews, to which you can subscribe for free here).
PET has also been busy launching an online poll about the 100,000 Genomes Project. The poll takes only a minute or two to complete - click here now to have your say. whether you know all about genomic sequencing and health data, or whether this area is completely new to you, PET wants to know what you think!
PET is running this poll in collaboration with Genomics England, the company established by the UK Government to sequence 100,000 whole genomes by 2017. At public events in Oxford and London last year, PET asked audiences what questions about the 100,000 Genomes Project they wanted to put to the public. Five questions were chosen from their suggestions, and these questions make up the newly launched poll.
In related news, PET and Genomics England recently participated in GenomeSeqWeek, a week of events and initiatives organised by the charity Genetic Alliance UK to explore the impact of whole genome sequencing. One of these events, 'Genome Sequencing: What Do Patients Think?', took place at at the Wellcome Trust and was attended by PET Communications Officer Sandy Starr. It opened with a presentation by George Freeman MP, the Government's Minister for Life Sciences, and saw the launch of a Patient Charter summarising patient views on genomic sequencing. PET is now picking up the baton with its 100,000 Genomes Project Poll, seeking the views of a wider audience.
As well as seeking the public's views on the uses of genomic and other health data, PET also has views of its own. Last year, for example, PET submitted a response to a Consultation on 'The Collection, Linking, Use and Exploitation of Biological and Health Data'. The Nuffield Council on Bioethics has now published a substantial and thought-provoking report on this issue, drawing upon consultation responses by PET and others, and also discussing the proceedings of last year's PET/Genomics England events.
Finally, Sandy Starr can be seen discussing these issues in the film below, entitled 'Big Data: Big Danger?'. This debate was part of the Battle of Ideas festival organised by the Institute of Ideas, and the film was made by the charity WORLDwrite for its WORLDbytes channel. Enjoy!