Hi Greg - I’m afraid we disagree here. Explicit consent is a valuable agreement, particularly for trials, particular studies where the burden on participating is there, but it is also an ongoing conversation. Overtime people details change, they marry, get ill, get better, move house, divorce, grow older, leave the country etc.etc. Consent for an entire population for every single population study has a burden - each of us would need to read every single idea, all the fair processing so we knew what we were consenting to and what that would mean, give consent, only to do it again and again - it would be time every day just to consent! Not only that, but the sub-populations that choose not to participate most time differ in important ways from those that choose to participate…. and what if we got ill and wanted to participate, but couldn’t? Also, what about the cost? This is our tax-paying money after all. Is it a good use of our money to be paying for these consent communications, designing the materials in accessible formats, shooting them out by post and by email to make sure that we reach everyone, collecting them all in, entering the results, processing the consent data. Surely, there is a social contract here, an assumption that we are willing to contribute something that costs us nothing if it betters the life of people in our society? This, on the understanding that we could opt-out ourselves or our children from the entire thing? Everyone can opt-out of their health data being shared for research on the NHS website and at their GPs for example and I believe there is the same for childrens education data for research purposes. I do hear you about keeping up with it all- there does need to be some trust here, that the work aims to benefit society, but there also needs to be really transparent communications. This is often done using media and social networking platforms, but can always been improved.
Yes you can opt out - opt out both at your GP surgery and on the NHS Digital (NHS England) website. Yes you are told about it in privacy notices on the websites of the data controllers Department of Education and NHS Digital/England (that's for this specific work). They tell you about the purposes for which they will use the personal data they collect and other data protection information. TBH though, everyone wants a better life and sharing the data that is collected about you in a really safe and secure way with you not having to lift a finger will make care better for everyone.
You're not told about it if information has already been given before the project started. You cannot expect people to regularly check websites of every organisation that they have ever given data to.
Explicit consent is the only ethical and legal way forward.
The NHS goes on about transparency and patient choice and consent, but its really a load of nonsense
Hi Greg - I’m afraid we disagree here. Explicit consent is a valuable agreement, particularly for trials, particular studies where the burden on participating is there, but it is also an ongoing conversation. Overtime people details change, they marry, get ill, get better, move house, divorce, grow older, leave the country etc.etc. Consent for an entire population for every single population study has a burden - each of us would need to read every single idea, all the fair processing so we knew what we were consenting to and what that would mean, give consent, only to do it again and again - it would be time every day just to consent! Not only that, but the sub-populations that choose not to participate most time differ in important ways from those that choose to participate…. and what if we got ill and wanted to participate, but couldn’t? Also, what about the cost? This is our tax-paying money after all. Is it a good use of our money to be paying for these consent communications, designing the materials in accessible formats, shooting them out by post and by email to make sure that we reach everyone, collecting them all in, entering the results, processing the consent data. Surely, there is a social contract here, an assumption that we are willing to contribute something that costs us nothing if it betters the life of people in our society? This, on the understanding that we could opt-out ourselves or our children from the entire thing? Everyone can opt-out of their health data being shared for research on the NHS website and at their GPs for example and I believe there is the same for childrens education data for research purposes. I do hear you about keeping up with it all- there does need to be some trust here, that the work aims to benefit society, but there also needs to be really transparent communications. This is often done using media and social networking platforms, but can always been improved.
The reason ECHILD hasn't attracted any controversy is because no one's heard of it. Another example of the NHS's lack of transparency.
Because no one's heard of it, its unlawful under GDPR, as they're obviously not telling parents about it.
Does the National Opt Out prevent data being included in ECHILD?
Yes you can opt out - opt out both at your GP surgery and on the NHS Digital (NHS England) website. Yes you are told about it in privacy notices on the websites of the data controllers Department of Education and NHS Digital/England (that's for this specific work). They tell you about the purposes for which they will use the personal data they collect and other data protection information. TBH though, everyone wants a better life and sharing the data that is collected about you in a really safe and secure way with you not having to lift a finger will make care better for everyone.
You're not told about it if information has already been given before the project started. You cannot expect people to regularly check websites of every organisation that they have ever given data to.
Explicit consent is the only ethical and legal way forward.
The NHS goes on about transparency and patient choice and consent, but its really a load of nonsense