The ethics team at the
Wellcome Trust Sanger Institute is conducting an online survey aiming to explore the ethical implications of whole genome research. They hope to capture the views of as many people as possible and use this information to guide policy on how genome research studies should be conducted, in advance of this kind of research becoming routine in the health service.
Standard practice for many years has been not share any information with participants who have provided a DNA sample. This decision is based on what was passed through the specific Ethics Committee for the study, and may vary study to study. But now things are changing and there is an increasing pressure to change this approach.
I had quite fixed views before taking part in the survey and thought I would want to know anything and everything that my DNA coded for. But I found that changed once I started reading about the potential implications. I was in line with the initial findings from the study, which found that most people would want to know if they were at risk of developing serious illnesses that could be treated, but that this view starts to change as people get older. Surprisingly, researchers were all for sharing the information with participants, but medical professionals were more cautious, partly because of the difficulties in explaining the implications of genomic data to patients.
At the moment, single gene testing is available on the NHS for relevant diseases, such as cancer. But earlier this year, the UK government announced plans that from 2014, they will allow 100,000 NHS patients to have their whole genome sequenced, with the aim of helping doctors understand a range of diseases in a much more precise way, and ultimately to deliver better tests, treatments and care.
The prospect that all of us could have our genomes sequenced from birth, as part of routine healthcare, no longer feels confined to the world of science fiction. These waters are of course uncharted and could be stormy. I’m glad to be contributing my views, and hope the survey will help the research community navigate some potentially challenging ethical issues.
To take part in the survey click here
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