Today, the House of Commons Science and Technology Committee published its report, Genomics and Genome Editing in the NHS. The report suggests that genomic medicine has the potential to transform care in the NHS, but more investment is needed in digital infrastructure and staff training, and ethical concerns over the collection and use of patient data must be fully addressed. The report also calls for the Moratorium which prohibits insurance companies from basing premiums on predictive genetic information to be renewed.
The Nuffield Council on Bioethics submitted a written response to the Committee’s inquiry last year, drawing on many of our in-depth reports, primarily Genome editing: an ethical review, and also Emerging biotechnologies: technology, choice and the public good; The collection, linking and use of data in biomedical research and healthcare: ethical issues; and Medical profiling and online medicine: the ethics of ‘personalised healthcare’ in a consumer age.
Our response, and the conclusions of Genome editing: an ethical review are cited in today’s report. The Committee also explore the potential of using whole genome sequencing in the NHS, and call on the Government to publish a full evaluation of the 100,000 Genomes Project. In our own recently published briefing note on whole genome sequencing in babies, we note, amongst other observations, that there is a clear need for further public consideration of how genetic data should be stored, accessed and used.
Our Director, Hugh Whittall, has written a blog post responding to the report.