Skip to main content
Premium Trial:

Request an Annual Quote

Not Exactly 'Volunteering'

The plan from the UK's National Health Service to provide free clinical sequencing to individuals with cancer and other conditions and to allow healthy people to pay for genomic analysis raises ethical concerns, writes David Shaw from the University of Basel and Maastricht University at the BMJ.

In January, NHS announced a 10-year plan that included an expansion of genetic services, such as offering whole-genome sequencing to children with cancer or rare genetic disorders. It later said healthy individuals — so-called "genomic volunteers" — could also pay for genomic analysis. Matthew Hancock, the health secretary, said that these individuals would help fuel the search for new treatments.

In his blog post at the BMJ, Shaw writes that being a genomic volunteer comes with costs. First, he notes that participants, including patients, must consent to being a research subject and having their data shared, which he notes opens them up to be re-identified. Healthy people who take part then pay twice, both with money and then with their data, and are not truly volunteers, he write. He adds that pay-for-sequencing proposal will only be available to those who can afford it, contrary to NHS's mission to be available to all. Lastly, Shaw notes that the plan did not mention genetic counseling and, without it, he says individuals could misinterpret their results, leading to harm.