An ethics team from the Wellcome Trust Sanger Institutein Cambridge, U.K., is launching an online survey to capture the views of as many people as possible about how they would like their genetic data handled.
Questions cover issues such as whether people would want to know about their genetic risk for hundreds of conditions at once, from risk of Alzheimer's disease or diabetes to sensitivity to certain antibiotics or statins. How do they feel about researchers generating this information but not sharing it with them?
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," said 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."
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 a matter weeks to understand the genetic basis of disease.
The team uses film in an innovative online questionnaire to explore the ethical implications of whole genome research. Survey participants need no prior knowledge about genetics, and anyone can participate. 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.
The online survey can be found at www.genomethics.org [Genome Research Limited].
"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," said Katrina Mcardle, mother of a child with developmental delay. "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," said Professor Anneke Lucassen, consultant in clinical genetics at the 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," said Professor Mike Parker, professor of bioethics and director of the Ethox Center at University of Oxford. "The questionnaire asks for feedback on some difficult ethical issues and I will be encouraging everyone I know to participate."