NEW YORK (GenomeWeb News) – The Wellcome Trust Sanger Institute has launched an online survey to collect the views of "ordinary people" about how personal genomic information should be used in medical research and by agencies such as the National Health Service.
The aim of the GenomEthics Survey is to collect public attitudes about how genetic information from projects like the UK government's plan to sequence the genomes of 100,000 citizens and other genome-driven medical initiatives may be used and shared with the patients who provide samples.
"Our survey helps people to learn about what is happening and gives them a tool to think through how they want to make this work for them," Anna Middleton, an ethics researcher at the Wellcome Trust Sanger Institute who is leading the survey project, said in a statement today.
"It also gives them a voice that will have a direct impact on policy. If people use health services already armed with some background information about genetics, together with some informed opinions, then they will be at a massive advantage," Middleton added.
The survey will be used to inform policies supporting the kind of genome-based medical research efforts that the UK plans to pursue more of, such as the £100 million ($152.8 million) 100,000 Genomes initiative that Prime Minister David Cameron unveiled in December.
The online survey uses brief video clips presenting scenarios that potential research participants may encounter if they participate in a study involving the use of their genetic information. After viewing the clips, respondents are asked questions about what should be done with incidental findings, pertinent findings, and raw data, what kinds of consent should be required for genomics research, and their views on the ethical duties of genomics researchers.
The questionnaire also dives a bit deeper, inquiring about what types of incidental findings might be more or less important, from those that are linked to life-threatening illnesses but which cannot be treated and those that can be treated, and about conditions that are serious but do not endanger their lives.
While the survey is open to healthcare workers, researchers, and policy-makers, Middleton said the institute "wants more views from Jo Public, from young people, from old folks, from mums and dads."
The Sanger Institute said it plans to conclude the survey and release the detailed findings later this year.