OOC: As this is a co-authored draft with Tinhampton, I want to discuss the implementation of changes with her first, but here are at least my responses and remarks to your comments:
Araraukar wrote:...ok, so anyone actually doing tests is not a testing entity, but computer databases are? You may want to reconsider that.
A valid point, I think. Do you feel the issue would be solved if it was reworded to "a "testing entity" as any entity that collects
and studies genetic data from any individual for non-forensic, non-medical purposes,"?
Araraukar wrote:Given most people still consider a genetic-anything to be medical-something, regardless of its purpose, not sure the "non-medical purpose" helps you in any way.
While I see where you're coming from, I think it would be good to differentiate between genetic testing that happens for medical purposes in hospitals, to find out genetic disorders, diseases etc. etc., and any form of testing that falls outside of that. The term "non-medical" feels the most appropriate in making that differentiation, but I will discuss with Tinhampton what we can potentially do with this.
Araraukar wrote:...or that of their guardian, yes? Because you can't explain things to very small children or people lacking the mental faculties to understand what DNA is and what the test is for, which is why guardians exist. Unless you consider very small children, very old people and mentally retarded people to not be people. Which sounds wrong.
By absolutely no means is this part meant to insinuate that those that you described are not people. I am certain Tinhampton will agree, and we'll make sure to add in "or that of their guardian" into that clause. It was simply an oversight during the writing, so thank you for catching it and pointing it out!
Araraukar wrote:I'd leave out the struck-out bit. I don't even think it fits the sentence.
I agree, that part can be left out, yes.
Araraukar wrote:This would make it impossible for labs doing the testing to charge for the testing? I don't think that's going to work.
The text of the proposal says "be distributed free of charge", which pertains to "all collected genetic data". It doesn't say anything about the initiation of the service to have a genetic test be done, which can be charged under the text of this proposal. Yet this is meant to prevent the sale of already collected genetic data to other parties. That's the entire "prohibiting the sale of genetic data" part of the resolution
Araraukar wrote:I don't understand this one. Are you repeating yourself for no reason or what?
No, that's not the case. This clause refers back to the entities mentioned in 3a, b and c, which also need to be prevented from sharing the collected genetic data. The other clause refers back to the testing entities. Essentially, it addresses the remark, I believe (not sure), you made on the previous proposal that testing entities would be able to use labs to distribute genetic data further. This clause is meant to stop that.
Araraukar wrote:This clause would work so much better if you went for singular here, with "mandates that every member state".
Seems like a reasonable suggestion, yeah.
Araraukar wrote:"Register themselves with" sounds wrong. Shouldn't it be "register to"? But in any case, because you use plural of member states, at the start, does this mean every single member state has to have a registry of all testing entities in the entire multiverse of WA nations? If you went for singular of member state, then it'd be just the ones operating in that particular nation.
"Register to" is meant for when you're registering yourself to an activity, yet "register with" is when you want to register yourself with a committee, place, registry etc., I believe. The remark about the singular use of "member states" is reasonable, and as I'm for that change, the bit about the registry should be solved as well.
Araraukar wrote:Also, if you must create a committee, give it a proper name. A register is a passive database, there's no "reporting to" or "proving compliance to" to a database. This reads as written for a committee yet trying not to use a committee, or you just forgot to edit the phrasing after removing the committee.
As the critique on the former proposal during the vote what was it unnecessarily created a committee, Tin and I agreed that it would be left out in this version of the proposal. Yet the existence of a registry is necessary for oversight, which also was one of the critiques expressed on the former proposal, and earlier in this drafting thread. As such, this bit was included to stimulate greater oversight on the testing entities.
Araraukar wrote:Also, how exactly would you go about "proving compliance with the clauses"? Like, you personally. If you were someone who does genetic testing in a lab, what would you do to prove your compliance with the clauses?
I'm not sure how Tin views it, but I personally would show financial trails to show that there is no suspicious activity or conduct if I was asked as a testing entity to prove compliance. A comprehensive list of transactions would be able to show whether there was money sent to a suspicious actor, or that unexplained sums were received for seemingly no good reason. I guess there could also be a proof of in-flow and out-flow of data, to show to whom and where any genetic data was sent, to ensure that it's only being sent to clients who have a right to see the data according to the articles of this resolution. That is how I envisioned it.
Araraukar wrote:There's the Wine And Crouton Conference, whose sole job that is. You can leave it out of this. Same for the "proving compliance with" from the previous bit.
I'll discuss it with Tin.
Araraukar wrote:And same here. There's already an unwieldy piece of WA doing punishing. You don't need to double down on it.
Idem dito, yet I do think we'll move to a removal of these bits as I do see that it duplicates what the WACC is already responsible for.
Araraukar wrote:How would they, if they're not allowed to know it? Or are they allowed to know it? You might want to make "individual's genetic information" private medical information somewhere in the definitions to begin with, by the way.
I'll have to discuss this with Tin, as this was originally not my own addition. And regarding the privacy, that is the entire point of this resolution, to increase the privacy of one's genetic information and to grant it where it wasn't already
that's why all those clauses prohibit the sharing of genetic data without consent etc.
Araraukar wrote:You might also want to change the title, because this has very little to do with the sale of genetic data anymore, and much more to do with distribution.
Not an unreasonable suggestion, I could see this be re-titled to "Regulation on the distribution of genetic data", or something along those lines. I'll have a look at a possible new title with Tinhampton.
Thank you for taking the time to provide extensive feedback on the draft, I think I can speak for both Tin and me when I say that we appreciate it