Oct 12, 2026 · 40 min · 12 segments
This episode explores the current debate on the intersection of research ethics, bioethics, clinical practice, AI governance, data protection and public trust. Joining presenter Claire O'Connell, are…
Claire O'ConnellHostSimone WalshGuest
So I want to take a look at the health research regulations, um, under the Data Protection Act.
I suppose these introduced new requirements around processing personal health data, and they established the consent declaration process.
Uh, but I suppose what lessons have been learned since those regulations were introduced back in 2018? Andrew?
So the, the term consent declaration, what essentially has happened in this, there are circumstances potentially that when there may be collections of data or information or samples-
... where it may not be possible to go back to the people who'd actually given those.
However, this new committee was set up as the Health Research Declaration- Consent Declaration Committee-
... which would look at proposals saying that under very specific circumstances, that potentially research would be allowed, which would be a good thing provided it's appropriately monitored and everybody puts, sets limits to.
And in fact, the 2018 regulations which were looking at how data were handled, uh, were good to some extent.
However, there was a pushback from researchers, of which I would have been one, which actually felt that some of the re- the restrictions placed on researchers were excessive, such as that you couldn't look at somebody's record to see whether they were suitable to trial.
You had to go and employ a third party to do that, even if it was your patient.
Um, and after a lot of lobbying, there are two 2020 regulation-- 2021 regulations introduced by then Minister Harris, which actually resolved quite a lot of issues, and since then it's certainly been helpful.
One of the specific things that's in that help those, uh, 2018 regulations is that you can't give blanket consent for whatever use that anybody may have for your data or your samples or your material, and I think that's a good thing.
So I want to take a look at the health research regulations, um, under the Data Protection Act.
I suppose these introduced new requirements around processing personal health data, and they established the consent declaration process.
Uh, but I suppose what lessons have been learned since those regulations were introduced back in 2018? Andrew?
So the, the term consent declaration, what essentially has happened in this, there are circumstances potentially that when there may be collections of data or information or samples-
... where it may not be possible to go back to the people who'd actually given those.
However, this new committee was set up as the Health Research Declaration- Consent Declaration Committee-
... which would look at proposals saying that under very specific circumstances, that potentially research would be allowed, which would be a good thing provided it's appropriately monitored and everybody puts, sets limits to.
And in fact, the 2018 regulations which were looking at how data were handled, uh, were good to some extent.
However, there was a pushback from researchers, of which I would have been one, which actually felt that some of the re- the restrictions placed on researchers were excessive, such as that you couldn't look at somebody's record to see whether they were suitable to trial.
You had to go and employ a third party to do that, even if it was your patient.
Um, and after a lot of lobbying, there are two 2020 regulation-- 2021 regulations introduced by then Minister Harris, which actually resolved quite a lot of issues, and since then it's certainly been helpful.
One of the specific things that's in that help those, uh, 2018 regulations is that you can't give blanket consent for whatever use that anybody may have for your data or your samples or your material, and I think that's a good thing.
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