
One in five people in England may have objections to proposals for the Secondary Uses Service because of moral and ethical concerns over the use of their data, Catholic bishops have warned.
The Catholics Bishops Conference says that the proposed consent model for the SUS, which means patients would not give explicit consent for their information to be included in the service, needs further work.
A spokesperson for the Conference said: “The issue is that if patient’s consent is not required it may mean that people’s data is used to enable research that people have ethical or moral objections to.
“Catholics make up 8% of the population and with Muslims and Jews there could be up to a fifth of the population that feels this is morally objectionable.”
The spokesperson said the Catholic Bishops Conference did not necessarily believe explicit consent would be necessary in every case.
He added: “We don’t want to hold things up and to get explicit consent in all cases would be cumbersome but we need to find some workable alternatives. There are examples of other countries that have hybrid systems for consent on research.”
The use of patient information by the SUS is currently out for consultation. The Conference spokesperson added: “We feel that this has been slightly bounced into consultation and that it has all been done rather in haste.”
The Conference is currently responding in detail to the SUS consultation which closes on 10 December. The spokesperson said the Conference would be happy to work with other faith groups to try and find a solution.
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19 January 2012
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