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Gene survey: Do you want to know your future diseases?

6 February 2012
Appeared in BioNews 643

The idea of whole genome sequencing is becoming ever more popular, but it could mean you end up with more information than you bargained for; from your resistance to certain drugs to your risk of developing a range of diseases. But would you want to know? The Wellcome Trust Sanger Institute ethics team has launched a survey to find out what people really do (and don't) want to know about their genomes.

Traditionally, researchers have studied anonymised samples, sequencing 20,000 or more gene in just a few weeks. While a given study might focus on cancer, the team may find genes linked with future risk of heart disease, a propensity to develop Alzheimer's disease, or even a piece of information about ancestry or paternity. Until now these 'incidental' or 'secondary' findings have not been fed back to the volunteers taking part.

This online survey will give the general public the opportunity to change the way this information is handled in the future.

'We need to understand what people want from whole genome testing', says Dr Anna Middleton, ethics researcher from the Wellcome Trust Sanger Institute. 'Policy is being written worldwide on what researchers should share from genome studies and yet much of this is based on anecdote and intuition'.

However, the questionnaire is not only to establish what participants want - it will also help understand the scientists' opinions. Dr Middleton explains some are concerned that asking the researchers to look for additional conditions will 'compromise or even cripple' the original research aims.

The launch of the survey follows a report from the Human Genomics Strategy Group, an independent cross-government advisory body, which aims to help UK patients benefit from genomic technology.

Professor Anneke Lucassen, consultant in clinical genetics at the University of Southampton, said: '[This] raises all sorts of ethical issues about what genetic results you share with people. Very soon this technology will be used in the NHS and we urgently need research that tells us what people want to know'.

The genomics and ethics (or 'genomethics') survey comprises ten short films, takes about 20 minutes to complete and doesn't need any prior knowledge of genetics. It is hoped that this will be one of the largest studies of its kind, and the results will help create policies for future genome studies.

Do you want to know what diseases lie in store?
Channel 4 |  31 January 2012
Ethics and Genomic Research: ‘Genomethics’
Genomes Unzipped |  31 January 2012
Genomethics |  31 January 2012
Sanger Institute's big gene survey to test public's view
BBC |  1 February 2012
Sanger Institute survey tests waters on genomic data use
Pharma Times |  31 January 2012
What are your views on what happens to your genomic information?
Wellcome Trust blog |  1 February 2012
What are your views on what happens to your genomic information?
Sanger press release |  31 January 2012
What are your views on what happens to your genomic information?
Swan UK |  31 January 2012
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