31 January 2012

What are your views on what happens to your genomic information?

Survey aims to be the largest to capture public attitudes to sharing genomic results

The new online survey will gather the views of people from all walks of life on how they would like their genetic data handled.

The new online survey will gather the views of people from all walks of life on how they would like their genetic data handled. [Genome Research Limited]

Would you want to know about your genetic risk for hundreds of conditions all in one go, ranging from whether you have a higher than average risk from Alzheimer's disease or diabetes or whether you are sensitive to certain antibiotics or statins? How do you feel about researchers generating this information but not sharing it with you?

An ethics team from the Wellcome Trust Sanger Institute today launches an online survey to capture the views of as many people as possible: they hope it will be the largest collection of opinions gathered to date.

It has been standard practice for many years to conduct genetic research anonymously and not share such findings with the research participants who provided the samples. However, there is now increasing pressure to change this approach.

"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. We aim to address this by conducting an international study that asks members of the public, health professionals and researchers for their views."

" We need to understand what people want from whole genome testing. "

Dr Anna Middleton

Genetic analysis of a saliva or blood sample can now reveal elements of a person's past, present and future medical health. In whole genome studies, researchers can examine all 20,000 human genes in only a matter weeks to understand the genetic basis of disease.

An ethics team from the Wellcome Trust Sanger Institute in Cambridge, UK use film in an innovative online questionnaire to explore the ethical implications of whole genome research. Participants in the survey need have no prior knowledge about genetics and anyone can participate (see www.genomethics.org). The study aims to be the largest of its kind in the world and will be used to guide policy on how genome research studies should be conducted. This survey is part of the proactive process of engaging with the public, before whole genome studies become part of health service practice.

The online survey can be found at www.genomethics.org

The online survey can be found at www.genomethics.org [Genome Research Limited]

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"I have completed the ethics questionnaire as I am currently taking part in a whole genome study and I wanted my views to be heard" says Katrina Mcardle, mother of a child with developmental delay who is participating in a whole genome study. "I am very keen to get a diagnosis for my son and the genome research may offer this, but I'm not sure I want to know lots of additional information about his future health that is unrelated to his diagnosis. Everyone should think about these issues and fill in this questionnaire."

"It is soon going to be cheaper and easier to look at all of a person's 20,000 genes in one go rather than searching for an individual gene, as currently happens," says Professor Anneke Lucassen, Consultant in Clinical Genetics, University of Southampton. "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."

"This is a really exciting project using an innovative questionnaire and the integrated films really bring it to life," says Professor Mike Parker, Professor of Bioethics and Director of the Ethox Centre at University of Oxford. "The questionnaire asks for feedback on some difficult ethical issues and I will be encouraging everyone I know to participate."

Notes to Editors

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Funding

This programme is funded by the Health Innovation Challenge Fund and the Wellcome Trust Sanger Institute.
http://www.hicfund.org.uk/

The Wellcome Trust Sanger Institute

The Wellcome Trust Sanger Institute is one of the world's leading genome centres. Through its ability to conduct research at scale, it is able to engage in bold and long-term exploratory projects that are designed to influence and empower medical science globally. Institute research findings, generated through its own research programmes and through its leading role in international consortia, are being used to develop new diagnostics and treatments for human disease.

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The Wellcome Trust

The Wellcome Trust is a global charitable foundation dedicated to achieving extraordinary improvements in human and animal health. We support the brightest minds in biomedical research and the medical humanities. Our breadth of support includes public engagement, education and the application of research to improve health. We are independent of both political and commercial interests.

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