0. How to get it right: Harvard ethics review/roadmap to pandemic resilience
1. if you are going to criticise the ethics of contact tracing app work, first establish a baseline - find out how manual contact tracing is done, what data is kept, what triggers it, what privacy risks there are. Who does the work? are they trained? is there a log (to avoid duplicating contact notifications by multiple staff and to record the test status of people). How does consent work from the pattient who's just tested positive and is probably stressed? How many false positive and negatives are there (people they falsely remembered they'd met, or encounters they forgot) etc etc- this is the standard an app has to meet at least.
2. know your medical ethics - it is standard that a new technology is introduced provided it is at least as good as existing "treatments" and no worse - see above. If contact apps tracing is also faster, and therefore reduces the number of people the virus spreads to before all possible infected people are found and isolated, then factor this in, as it is part of the care requirements.
3. Don't talk about stuff you don't understand - i've seen vague criticisms of the use of BLE (Bluetooth Low Energy) as it isn't "accurate enough" without a single citation on measurements that support this. There are multiple measurements and techniques that support that it is an ok proxy for encounters between people carrying capable smart phones with the relevant app running. The main criticisms are i) that might only be 60-75% of phones (depending on country/region/demographic) and ii) only around 75-80% of people have any sort of smart phone. See 1/ its additional, and faster/complimentary, not a replacement for manual contact tracing. Also see the care taken by Google/Apple (see prev blog) in terms of taking care of privacy- this is largely better at protecting people than manual tracing can be (there are modest exceptions - exercise for reader, think of one).
4. No-one's claimed you use contact tracing to replace testing (or more ludicrously, to replace the hunt for treatments, or vaccines or the actual provision of PPE for key workers who encounter a lot of potentially infectious people (including care homes, bus drivers, supermarket checkout staff etc). Don't claim people want to re-prioritise resources because they are techno-solutionists without actually finding out their motives and community. The idea of contact tracing apps came from (and is supported by) epidemiologists (e.g. from LSHTM in the UK). Tech people worked from what they asked, not from some bluesky fantasy. This includes the empirical testing of which is preferred proxy for encounters, and the fact that it is predicated on testing. Testing alone doesn't fix things fast enough either (unless you had a 15 minute test cheap enough to run on everyone nearly daily).
5. contact tracing doesn't have to be in more than a few percent of the population to be useful for its original purpose, which is to get more precision about the epidemic parameters to improve models, learn about asymptomatic carriers, infection rates between groups like children-to-adults, and the expiry date on immunity, whether acquired through surviving infection or from eventual vaccine deployment (many vaccines also have limited lifetime though usually better and longer than having had the disease, we still need to know).
6. Mission creep:- discussed elsewhere - a mix of tech, regulatory and legal frameworks need to be clarified to minimise this risk- including (obviously) sunsetting. This is not new. People that work in clinical trials/medical ethics know this stuff - if you are a tech ethicist and you have not read up standard protocols in that space yet, please do so before criticising tech app writers who have. The goal of the privacy preserving/decentralised bluetooth API from Google/Apple is not to mess up earlier more centralised app designs, it is to offer a more ethical way forward and represents the way the tech sector has considered best practice ahead of some of the people criticising them
What's worse than techies who ignore ethics and context? ethicists who ignore the tech and context:
For the avoidance of doubt, Do No Harm.
Comprehensive list of tracer apps, initiatives, design docs etc
1. if you are going to criticise the ethics of contact tracing app work, first establish a baseline - find out how manual contact tracing is done, what data is kept, what triggers it, what privacy risks there are. Who does the work? are they trained? is there a log (to avoid duplicating contact notifications by multiple staff and to record the test status of people). How does consent work from the pattient who's just tested positive and is probably stressed? How many false positive and negatives are there (people they falsely remembered they'd met, or encounters they forgot) etc etc- this is the standard an app has to meet at least.
2. know your medical ethics - it is standard that a new technology is introduced provided it is at least as good as existing "treatments" and no worse - see above. If contact apps tracing is also faster, and therefore reduces the number of people the virus spreads to before all possible infected people are found and isolated, then factor this in, as it is part of the care requirements.
3. Don't talk about stuff you don't understand - i've seen vague criticisms of the use of BLE (Bluetooth Low Energy) as it isn't "accurate enough" without a single citation on measurements that support this. There are multiple measurements and techniques that support that it is an ok proxy for encounters between people carrying capable smart phones with the relevant app running. The main criticisms are i) that might only be 60-75% of phones (depending on country/region/demographic) and ii) only around 75-80% of people have any sort of smart phone. See 1/ its additional, and faster/complimentary, not a replacement for manual contact tracing. Also see the care taken by Google/Apple (see prev blog) in terms of taking care of privacy- this is largely better at protecting people than manual tracing can be (there are modest exceptions - exercise for reader, think of one).
4. No-one's claimed you use contact tracing to replace testing (or more ludicrously, to replace the hunt for treatments, or vaccines or the actual provision of PPE for key workers who encounter a lot of potentially infectious people (including care homes, bus drivers, supermarket checkout staff etc). Don't claim people want to re-prioritise resources because they are techno-solutionists without actually finding out their motives and community. The idea of contact tracing apps came from (and is supported by) epidemiologists (e.g. from LSHTM in the UK). Tech people worked from what they asked, not from some bluesky fantasy. This includes the empirical testing of which is preferred proxy for encounters, and the fact that it is predicated on testing. Testing alone doesn't fix things fast enough either (unless you had a 15 minute test cheap enough to run on everyone nearly daily).
5. contact tracing doesn't have to be in more than a few percent of the population to be useful for its original purpose, which is to get more precision about the epidemic parameters to improve models, learn about asymptomatic carriers, infection rates between groups like children-to-adults, and the expiry date on immunity, whether acquired through surviving infection or from eventual vaccine deployment (many vaccines also have limited lifetime though usually better and longer than having had the disease, we still need to know).
6. Mission creep:- discussed elsewhere - a mix of tech, regulatory and legal frameworks need to be clarified to minimise this risk- including (obviously) sunsetting. This is not new. People that work in clinical trials/medical ethics know this stuff - if you are a tech ethicist and you have not read up standard protocols in that space yet, please do so before criticising tech app writers who have. The goal of the privacy preserving/decentralised bluetooth API from Google/Apple is not to mess up earlier more centralised app designs, it is to offer a more ethical way forward and represents the way the tech sector has considered best practice ahead of some of the people criticising them
What's worse than techies who ignore ethics and context? ethicists who ignore the tech and context:
For the avoidance of doubt, Do No Harm.
Comprehensive list of tracer apps, initiatives, design docs etc
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