On 30th September 2016 we were part of a very exciting event to determine, from a patient perspective, what the research agenda should be for social scientists researching genomics. Here, patients and their representatives (some from the 100k Genomes Project, others from families with genetic conditions) met with 5 social scientists from a Genomics England … Continue reading
The Global Alliance for Genomics and Health (GA4GH) and the Wellcome Genome Campus have launched a new project to explore global public attitudes and beliefs around the sharing of genetic information. This has become increasingly urgent as we enter a new era of genomic medicine in which unique ethical and moral questions arise, at both … Continue reading
This guest blog comes from Jon Roberts again; doctoral student from Kings College London and Wellcome Genome Campus. See Jon’s research here. As a genetic counsellor one of the most difficult questions I faced in clinic was from parents asking: “how do we talk about the genetic condition in our family with our children?” Talking … Continue reading
This guest blogpost comes from Jon Roberts, genetic counsellor and PhD student at KCL and Wellcome Genome Campus. Jon is exploring how popular films and books reach the public and contribute to understanding and communication about genetics. We’re living in age where science fiction rules. This is exemplified by the popularity of the comic book … Continue reading
Here is a little film that gives an overview of what we did in the Socialising the Genome project. Julian Borra and I grapple with how to turn themes from the 5 Focus Groups into creative narrative that we hope will resonate. Does it work or not? We are waiting to find out via the … Continue reading
How easy is it to strike up a conversation about genomics? Geno-what? Does the average person on the street know enough about the issues to even care? We’ve just launched a project called Socialising the Genome to explore how to turn genomics from an anti-social concept to a more social one. Animations were created from … Continue reading
We made it! Finally, the main set of results from our survey (opposite) have been published. Below is the press release the Wellcome Trust Sanger Institute put out about the work. Thank you so much to those of you who took the time to complete the survey and tell us what you feel researchers should … Continue reading
This blog post is based on the talk I gave at the launch of the Nuffield Council of Bioethic’s report The collection, linking and use of data in biomedical research and health care: ethical issues on Tuesday 3 February 2015 in London. I was asked to offer a response to their report, drawing on my … Continue reading
In 2010, when the Deciphering Developmental Disorders project began screening patient genomes, we began talking to scientists, clinicians and patient families to uncover potential ethical issues. It was always our intention that the genetic data relevant to the patient’s developmental disorder would be shared with patient families as this, the diagnosis they had often waited … Continue reading
The genomic era is upon us. From the Government’s pledge to sequence 100,000 genomes to the launch of 23andMe, a private company that can offer personal genotyping for £125, having bits of your genome sequenced has become a very accessible option. Millions of us will be able to receive information encoded in the three billion chemical … Continue reading
