“As scientific knowledge advances and societal views evolve, the clinical use of germline editing should be revisited on a regular basis” 2015 organizing committee of the First International Summit on Human Genome Editing. And here we are at the end of 2018, ‘revisiting’ this for real. I’m writing this while sitting in the audience in … Continue reading
Genetic counsellors sit on the front line of genomics – translating (literally) the science for people who are trying to make sense of it. They help people to figure out if testing in pregnancy is right for them or whether to proceed with embryo selection to ensure a family condition is not passed on. Genetic … Continue reading
By Vicky Chico and Anna Middleton Following on from our previous blog on the legal duty to share genetic information, we are excited to see that the Court of Appeal announced yesterday that a trial will go ahead. In summary, the daughter of a man with Huntington’s Disease is suing the hospital caring for her … Continue reading
Guest blog by Dr Vicky Chico, Legal Consultant, Society and Ethics Research Group, Wellcome Genome Campus, Cambridge Yesterday myself and a colleague from the Society and Ethics Research Group sat in the Court of Appeal for ABC v St George’s Healthcare NHS Trust. Almost two years ago Judge Nicol (‘Nicol J’), in the High Court, … Continue reading
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
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
This past Friday on the Genome Campus, Dr Anna Middleton of the Wellcome Trust Sanger Institute gave an interesting seminar about the method and findings of a survey she had delivered about genome ethics. I was interested because I use surveys in my work to understand people’s attitudes towards and experience of websites, but also … Continue reading
