Genetic sequencing for everyone? UK trial program challenged as ‘ethically questionable’

| | November 15, 2019
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Image: Scott Bakal/NPR
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Plans for the National Health Service to sequence the DNA of every baby born in the UK, starting with a pilot scheme of 20,000 children, were announced by health minister Matt Hancock [November 5]. It sounds like the UK is leading the way in high-tech healthcare – but doctors are saying the idea is ethically questionable.

We are only at the beginning of our journey to understand the complexity of the human genome, and some of the information we have learned so far can create difficult dilemmas.

Take the genetic condition Huntington’s disease, which starts with mild symptoms in middle age, eventually progressing to severe disability and early death. There is no cure.

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Deciding to learn if you have the gene responsible is such a personal choice that it must be left to the individual concerned once they turn 18.

[I]ntroducing sequencing for everyone is a massive step. It will require public consultation over the ethical questions – not to mention on practical issues like how the data will be stored securely and the impact on doctors’ workloads, says [the British Society for Genetic Medicine’s Frances] Elmslie. “We need to think really carefully about this.”

Read full, original post: Sequencing the genome of every UK baby would be an ethical minefield

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