Most People Eager to Know the Secrets of Their Genetics

A survey done by Wellcome Trust Sanger Institute in the UK of nearly 7,000 people has revealed that 98 per cent want to be informed if researchers using their genetic data stumble upon indicators of a serious preventable or treatable disease. The study, which comes after the government’s announcement that Genomics England will sequence 100,000 genomes by 2017, begins an important and on-going conversation about how our genomic data is used. The study was published in April 2015 in the European Journal Human Genetics.

A release from the institute reports that the results show that genomic data has a perceived value to participants even if it is not currently clear what the information means for health outcomes. However, in general, the majority of people were interested in clinically actionable data and genetic professionals surveyed were concerned about returning data that cannot yet be interpreted accurately.

The release quotes Dr Anna Middleton, first author from the Wellcome Trust Sanger Institute, as saying, “The advent of fast, efficient genetic sequencing has transformed medical research over the past decade and it’s set to revolutionize clinical care in the future. Policy surrounding the use of genetic data in research and clinical settings must be directed by the views and experiences of the public, patients, clinicians, genetic health professions and genomic researchers. This study represents a first step in informing people of the issues and gathering their responses.”

The usefulness of findings was an important consideration for the majority of respondents, who were drawn from 75 countries around the world. The majority of participants wanted to receive information about serious conditions, even if the risk of developing the condition was as low as 1 per cent. However, fewer people were interested in receiving results for less serious conditions.

“When we asked patients and families how much they want to know about their genetic information their immediate reaction was that whatever information the researchers or clinicians found out, they wanted to know too,” says Alastair Kent OBE, Director of Genetic Alliance UK, a charity that works to improve the lives of people affected by genetic disorders. “But there can be no one size fits all. We need to make sure that there is enough information and support available to allow individuals to make an informed choice about what is right for their situation. We need to remember this information belongs to the individual and they should be able to decide for themselves what they do and don’t find out about their health – which means we need to start thinking about how this can be recognized.”