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
“Why do we itch – what’s occurring in our bodies?” and “Do animals have belly buttons?” These are just a few of the questions that were fired at me by young people taking part in the Wellcome Trust funded online schools competition ‘I’m a Scientist Get Me Out of Here’. I’m really proud to have … Continue reading
Genetic screening: the voices that need to be heard.
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
An ancestor of Prince William’s from the 19th century was half Indian, according to The Times. This claim is based on analysis of his distant cousins’ DNA. We have such technology today, but how comfortable would you be to find out what your DNA tells about you on the front page of a newspaper? Your … Continue reading
The world reacted with shock as Angelina Jolie, Hollywood actress, UN Ambassador and world renowned beauty announced in the New York Times that she had undergone a ‘cancer risk reducing’ mastectomy to decrease her chances of developing breast cancer. She had previously had genetic testing that had revealed she was a BRCA1 (Breast Cancer Gene … Continue reading
To date, 3000 people have completed our online survey exploring various ethical implications arising from the application of genome technology. Completed questionnaires have been received from across the world, from Beijing to Bucharest and from San Diego to Stuttgart. However, we need more! We asked Dame Sally Davies, Chief Medical Officer to the British government … Continue reading
The American College of Medical Genetics (ACMG) has recently published recommendations for reporting incidental findings (IFs) in clinical exome and genome sequencing. These advocate actively searching for a set of specific IFs unrelated to the condition under study. For example, a two year old child may have his (and his parents’) exome sequenced to explore … Continue reading
