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[LAST CALL] Prohibiting the Sale of Genetic Data

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Daarwyrth
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[LAST CALL] Prohibiting the Sale of Genetic Data

Postby Daarwyrth » Mon May 03, 2021 4:30 am

OOC: In light of the failure of "Regulation on the Integrity of Genetic Data" to pass, and the valid points of feedback that the resolution proposal had received during its vote, I have received a tremendous amount of help from Tinhampton in redrafting the proposed resolution. Many thanks to Tinhampton for the effort put into this new draft, it is such a great improvement from what the proposal draft first was! As such, we decided to collaborate and co-author this resolution proposal.

CURRENT DRAFT:
Prohibiting the Sale of Genetic Data
Category: Civil Rights | Strength: Mild

Believing that those who collect genetic material from others should not be entitled to distribute that material to others (for profit or otherwise) for no good reason whatsoever, the General Assembly hereby:

  1. defines, for the purposes of this resolution:

    1. an "individual" as a natural person who is not deceased,

    2. a "testing entity" as any entity that collects genetic data from any individual for non-forensic, non-medical purposes,

    3. "collected genetic data" as any genetic data that is collected from any individual by a testing entity for non-forensic, non-medical purposes, and

  2. declares that no individual shall have any genetic data collected from them for non-forensic, non-medical purposes without their free and informed consent,

  3. forbids the distribution of collected genetic data by the testing entity or any other involved entity that has collected it, to any individual (or any other entity) without the free and informed consent of the individual from which that data was collected, except:

    1. to the testing entity itself and the individual from whom that genetic data was collected,

    2. to laboratories for the sole purpose of analysing that genetic data, or

    3. if required from a law enforcement agency by a legally-binding court order, where this is necessary to determine a suspect's guilt or involvement in a crime that is being investigated,

  4. requires that all collected genetic data distributed under Clauses 3a, 3b and 3c, or otherwise distributed with the free and informed consent of the individual it was collected from, be distributed free of charge,

  5. orders all entities to whom collected genetic data has been distributed under Clauses 3a, 3b or 3c not to distribute such data to any entity not listed in one of those three clauses, except where it is collected under Clause 3c and must be shown as evidence to a court,

  6. mandates that member states:

    1. establish and maintain a registry which all testing entities operating within their jurisdiction shall register themselves with, and to which those entities will report to four times per year proving their compliance with Clauses 2, 3 and 4, and

    2. notify those testing entities operating within their jurisdiction who refuse to comply with the provisions of Clauses 2, 3, and 4 about how to mitigate their failure to comply with such provisions, and

    3. punish said testing entities if, after receiving a notice under Clause 6b, they remain non-compliant with any of the aforementioned provisions, and

  7. finally mandates that members do not use the contents of an individual's genome as grounds to discriminate against that individual.

Co-authored with Tinhampton.
Last edited by Daarwyrth on Tue Jun 01, 2021 10:15 am, edited 16 times in total.
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Postby Daarwyrth » Mon May 03, 2021 4:30 am

DRAFT 4:
Prohibiting the Sale of Genetic Data
Category: Civil Rights | Strength: Mild

Believing that those who collect genetic material from others should not be entitled to distribute that material to others (for profit or otherwise) for no good reason whatsoever, the General Assembly hereby:

  1. defines, for the purposes of this resolution:

    1. an "individual" as a natural person who is not deceased,

    2. "collected genetic data" as any genetic data that is collected from any individual by a testing entity for non-forensic, non-medical purposes, and

    3. a "testing entity" as any entity that collects genetic data from any individual for non-forensic, non-medical purposes,

  2. declares that no individual shall have any genetic data collected from them for non-forensic, non-medical purposes without their free and informed consent,

  3. forbids the distribution of collected genetic data by the testing entity or any other involved entity that has collected it, to any individual (or any other entity) for any reason without the free and informed consent of the individual from which that data was collected, except:

    1. to the testing entity itself and the individual from whom that genetic data was collected,

    2. to laboratories for the sole purpose of analysing that genetic data, or

    3. if required from a law enforcement agency by a legally-binding court order, where this is necessary to determine a suspect's guilt or involvement in a crime that is being investigated,

  4. requires that all collected genetic data distributed under Clauses 3a, 3b and 3c, or otherwise distributed with the free and informed consent of the individual it was collected from, be distributed free of charge,

  5. orders all entities to whom collected genetic data has been distributed under Clauses 3a, 3b or 3c not to distribute such data to any entity not listed in one of those three clauses, except where it is collected under Clause 3c and must be shown as evidence to a court,

  6. mandates that member states:

    1. establish and maintain a registry which all testing entities operating within their jurisdiction shall register themselves with, and to which those entities will report to four times per year proving their compliance with Clauses 2, 3 and 4, and

    2. notify those testing entities operating within their jurisdiction who refuse to comply with the provisions of Clauses 2, 3, and 4 about how to mitigate their failure to comply with such provisions, and

    3. punish said testing entities if, after receiving a notice under Clause 6b, they remain non-compliant with any of the aforementioned provisions, and

  7. reminds members that the contents of an individual's genome must not be used as grounds to discriminate against that sapient.

Co-authored with Tinhampton.


DRAFT 3:
Prohibiting the Sale of Genetic Data
Category: Civil Rights | Strength: Mild

Believing that those who collect genetic material from others should not be entitled to distribute that material to others (for profit or otherwise) for no good reason whatsoever, the General Assembly hereby:

  1. defines, for the purposes of this resolution:

    1. an "individual" as a natural person who is not deceased,

    2. "collected genetic data" as any genetic data that is collected from any individual by a testing entity for non-forensic, non-medical purposes, and

    3. a "testing entity" as any entity that collects genetic data from any individual for non-forensic, non-medical purposes,

  2. declares that no individual shall have any genetic data collected from them for non-forensic, non-medical purposes without their free and informed consent,

  3. forbids the distribution of collected genetic data by the testing entity or any other involved entity that has collected it, to any individual (or any other entity) for any reason without an individual's free and informed consent, except:

    1. to the testing entity itself and the individual from whom that genetic data was collected,

    2. to laboratories for the sole purpose of analysing that genetic data, or

    3. if required from a law enforcement agency by a legally-binding court order, where this is necessary to determine a suspect's guilt or involvement in a crime that is being investigated,

  4. requires that all collected genetic data distributed under Clauses 3a, 3b and 3c, or otherwise distributed with the free and informed consent of the individual it was collected from, be distributed free of charge,

  5. orders all entities to whom collected genetic data has been distributed under Clauses 3a, 3b or 3c not to distribute such data to any entity not listed in one of those three clauses, except where it is collected under Clause 3c and must be shown as evidence to a court,

  6. mandates that member states:

    1. establish and maintain a registry which all testing entities operating within their jurisdiction shall register themselves with, and to which those entities will report to four times per year proving their compliance with Clauses 2, 3 and 4, and

    2. notify those testing entities operating within their jurisdiction who refuse to comply with the provisions of Clauses 2, 3, and 4 about how to mitigate their failure to comply with such provisions, and

    3. punish said testing entities if, after receiving a notice under Clause 6b, they remain non-compliant with any of the aforementioned provisions, and

  7. reminds members that the contents of an individual's genome must not be used as grounds to discriminate against that sapient.

Co-authored with Tinhampton.


DRAFT 2:
Prohibiting the Sale of Genetic Data
Category: Civil Rights | Strength: Mild

Believing that those who collect genetic material from others should not be entitled to distribute that material to others (for profit or otherwise) for no good reason whatsoever, the General Assembly hereby:

  1. defines, for the purposes of this resolution:

    1. a "sapient" as a sapient being who is not deceased,

    2. "collected genetic data" as any genetic data that is collected from any sapient by a testing entity for recreational, non-medical purposes, and

    3. a "testing entity" as any entity that collects genetic data from any sapient for recreational, non-medical purposes,

  2. declares that no sapient shall have any genetic data collected from them for recreational, non-medical purposes without their free and informed consent,

  3. forbids the distribution of collected genetic data by the testing entity that has collected it to any sapient (or any other entity) for any reason without that sapient's free and informed consent, except:

    1. to the testing entity itself and the sapient from whom that genetic data was collected,

    2. to laboratories for the sole purpose of analysing that genetic data, or

    3. if required from a law enforcement agency by a legally-binding court order, where this is necessary to determine a suspect's guilt or involvement in a crime that is being investigated,

  4. requires that all collected genetic data distributed under Clauses 3a, 3b and 3c, or otherwise distributed with the free and informed consent of the sapient it was collected from, be distributed free of charge,

  5. mandates that member states:

    1. notify those testing entities physically present within their jurisdiction who refuse to comply with the provisions of Clauses 2, 3, and 4 about how to mitigate their failure to comply with such provisions, and

    2. punish said testing entities if, after receiving a notice under Clause 5a, they remain non-compliant with any of the aforementioned provisions, and

  6. reminds members that the contents of a sapient's genome must not be used as grounds to discriminate against that sapient.

Co-authored with Tinhampton.


DRAFT 1:
Prohibition on the Sale of Genetic Data
Regulation | Consumer Protection

The General Assembly,

Aware that the genetic data of sapient beings spreads across the consumer market through commercially offered DNA tests;

Concerned that some entities like corporations or independent traders may treat the genetic data of consumers produced by these tests as a commodity to be bought and sold;

Convinced that through international cooperation between member states the purchase and sale of genetic data can be halted, and thus its integrity preserved;

Hereby,

  1. Defines for the purposes of this resolution:

    1. 'commercial DNA test' as any sort of genetic test that is offered as a good or service, directly to consumers in the form of sapient beings, for recreational, non-medical purposes;

    2. 'commercial entity' as any entity that offers and distributes non-medical DNA tests as goods or services, directly to consumers, for recreational, non-medical purposes;

    3. 'third party' as any entity that is not the commercial entity, the laboratory conducting the DNA testing for the latter, or the consumer of commercial DNA tests;

  2. Prohibits commercial entities from sharing the genetic data that is produced by the commercial DNA tests that they offer to consumers with third parties, for monetary compensation or otherwise, without prior, explicit consent of the consumer in question;

  3. Clarifies that the prohibition under Clause 2 may be waived to the extent to which it obstructs judicial entities during criminal investigations, on the condition that those entities are in the possession of a legally valid court order, and substantive evidence of a suspect's guilt and/or involvement in the crime that is being investigated;

  4. Further clarifies that the prohibition under Clause 2 applies to the genetic data that is produced by recreational, non-medical genetic testing conducted on sapient beings, and does not pertain to non-sapient beings such as animals or pets, nor should it impede upon the processes of scientific research;

  5. Requires commercial entities offering commercial DNA tests to consumers to register with a database that is to be overseen and administrated by the WACC, and instructs the WACC with the following:

    1. Investigating any commercial entity around which signs and signals have emerged that they are non-compliant with the articles of this resolution;

    2. Issuing guidelines to those commercial entities that find themselves in a state of non-compliance with the articles of this resolution, on how to mitigate that state;

    3. Imposing sanctions and/or other punitive measures on non-compliant commercial entities, after earlier attempts at eliciting rectification have failed;

  6. Instructs member states to enact any rectifying or punitive actions that are imposed by the WACC unilaterally, on any commercial entity, that remains in a state of non-compliance.
Last edited by Daarwyrth on Tue Jun 01, 2021 10:07 am, edited 5 times in total.
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Postby Tinhampton » Mon May 03, 2021 10:36 am

Alexander Smith, Tinhamptonian Delegate-Ambassador to the World Assembly: I am pleased to have worked together with Maria vyn Nysen, my colleague from Daarwyrth, on this second draft that satisfies many of our delegation's concerns, and should continue to allay the well-documented fears of others as well. We will further our co-operation on this proposal as and when feedback comes in.
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Postby Daarwyrth » Sat May 08, 2021 4:46 am

Tinhampton wrote:Alexander Smith, Tinhamptonian Delegate-Ambassador to the World Assembly: I am pleased to have worked together with Maria vyn Nysen, my colleague from Daarwyrth, on this second draft that satisfies many of our delegation's concerns, and should continue to allay the well-documented fears of others as well. We will further our co-operation on this proposal as and when feedback comes in.

Vyn Nysen: "It has indeed been a pleasure to work together with my esteemed colleague Alexander Smith, the Delegate-Ambassador of Tinhampton, to improve upon the ideas and intents of "Regulation on the Integrity of Genetic Data", and reforge it into something that addresses the flaws and concerns expressed during the vote in the General Assembly. We'd be more than glad to take any feedback that still arises in light of the redrafted version of the proposal, and work with our dear colleagues from Tinhampton's delegation to implement them into the resolution proposal."
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Postby Junitaki-cho » Sat May 08, 2021 6:43 pm

A few thoughts:

- Your definition of "sapient in 1(a) is tautological and generally a bit silly.
- I'm not sure the other definitions gain anything from using the term "recreational." Every word you include there opens up an opportunity for a loophole.
- Be mindful that your definition of "testing entity" has become considerably broader, and may now encompass law enforcement entities doing forensic investigation. You'll need to look at the text through that lens and make sure you're not unduly hindering the ability of LEO to perform such analysis, possibly by adding "non-forensic" as a qualifier here and there.
- At the risk of being pedantic, there doesn't seem to be any provision in here preventing other entities, such as the laboratories, from further sharing that genetic data.
- Could you clarify what clause 4 is going for?
- One of the big missing components here is oversight. There's still no requirement for testing entities to identify themselves to either a national or international regulatory unit, meaning member states are wholly responsible for monitoring for applicable companies. I don't know if this should be overseen by the WA or left to national governments, that part is up to you, but I think you need a structure in place and a stronger disciplinary action than just "punish[ing]" non-compliant entities.
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Postby Tinhampton » Sat May 08, 2021 7:25 pm

Speaking in my capacity as co-author only.

Junitaki-cho wrote:- Your definition of "sapient["] in 1(a) is tautological and generally a bit silly.

I was thinking of bullet point 4 of Ara's post here when I suggested that.

Junitaki-cho wrote:- I'm not sure the other definitions gain anything from using the term "recreational." Every word you include there opens up an opportunity for a loophole.
- Be mindful that your definition of "testing entity" has become considerably broader, and may now encompass law enforcement entities doing forensic investigation. You'll need to look at the text through that lens and make sure you're not unduly hindering the ability of LEO to perform such analysis, possibly by adding "non-forensic" as a qualifier here and there.

I will likely suggest to Daarwyrth, the actual author of this proposal, that he replace references to "recreational" with references to "non-forensic."

Junitaki-cho wrote:- At the risk of being pedantic, there doesn't seem to be any provision in here preventing other entities, such as the laboratories, from further sharing that genetic data.

Again, I'll talk to Daarwyrth about that.

Junitaki-cho wrote:- Could you clarify what clause 4 is going for?

To ensure that the sale of genetic data is, in fact, prohibited. :P

Junitaki-cho wrote:- One of the big missing components here is oversight. There's still no requirement for testing entities to identify themselves to either a national or international regulatory unit, meaning member states are wholly responsible for monitoring for applicable companies. I don't know if this should be overseen by the WA or left to national governments, that part is up to you, but I think you need a structure in place and a stronger disciplinary action than just "punish[ing]" non-compliant entities.

Had Daarwyrth rejected Article 5 of my original draft (i.e. of the current draft :P), I would have suggested that a national registry of testing entities - rather than an international WAGDOA-style registry - be set up as a compromise. Yet again, I'll bring that compromise up with Daarwyrth.
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Postby Imperium Anglorum » Sun May 09, 2021 4:42 am

Please excise the word "sapient" from your proposal and use "individual" or "natural person" instead.

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Postby Daarwyrth » Sun May 09, 2021 6:45 am

Junitaki-cho wrote:A few thoughts:

- Your definition of "sapient in 1(a) is tautological and generally a bit silly.
- I'm not sure the other definitions gain anything from using the term "recreational." Every word you include there opens up an opportunity for a loophole.
- Be mindful that your definition of "testing entity" has become considerably broader, and may now encompass law enforcement entities doing forensic investigation. You'll need to look at the text through that lens and make sure you're not unduly hindering the ability of LEO to perform such analysis, possibly by adding "non-forensic" as a qualifier here and there.
- At the risk of being pedantic, there doesn't seem to be any provision in here preventing other entities, such as the laboratories, from further sharing that genetic data.
- Could you clarify what clause 4 is going for?
- One of the big missing components here is oversight. There's still no requirement for testing entities to identify themselves to either a national or international regulatory unit, meaning member states are wholly responsible for monitoring for applicable companies. I don't know if this should be overseen by the WA or left to national governments, that part is up to you, but I think you need a structure in place and a stronger disciplinary action than just "punish[ing]" non-compliant entities.

Imperium Anglorum wrote:Please excise the word "sapient" from your proposal and use "individual" or "natural person" instead.

Vyn Nysen: "In close consultation with our colleagues from the Tinhamptonian delegation, we have worked your commentary and feedback into the newest draft version of the proposal. We would love to hear what you think of the changes and amendments."
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Postby Junitaki-cho » Sun May 09, 2021 10:39 am

Definitely looking better. I still think 6(c) should be more specific than "punish" so more lax member governments can't issue a fine and look the other way, but otherwise I'm liking this more. I'll give it another look in a couple days.

3. forbids the distribution of collected genetic data by the testing entity or any other involved entity, that has collected it to any individual (or any other entity) for any reason without that individual's free and informed consent, except:


Also, it's just occurred to me that this is written such that it forbids distributing genetic data to third parties unless those third parties consent, or at least it can be credibly read that way. It needs clearer language that specifies it's the client's decision.
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Postby Ardiveds » Sun May 09, 2021 12:40 pm

Junitaki-cho wrote:Definitely looking better. I still think 6(c) should be more specific than "punish" so more lax member governments can't issue a fine and look the other way, but otherwise I'm liking this more. I'll give it another look in a couple days.

OOC: Even if 6c wasn't there, member nations would have to make non-compliance expensive enough for legal individuals within their jurisdiction so that it is clear the government is doing its best trying to make everyone comply with WA laws because these laws don't just apply to member governments but also natural and legal individuals within their jurisdiction. You know, good faith and all that.
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Postby Daarwyrth » Sun May 09, 2021 12:53 pm

Ardiveds wrote:
Junitaki-cho wrote:Definitely looking better. I still think 6(c) should be more specific than "punish" so more lax member governments can't issue a fine and look the other way, but otherwise I'm liking this more. I'll give it another look in a couple days.

OOC: Even if 6c wasn't there, member nations would have to make non-compliance expensive enough for legal individuals within their jurisdiction so that it is clear the government is doing its best trying to make everyone comply with WA laws because these laws don't just apply to member governments but also natural and legal individuals within their jurisdiction. You know, good faith and all that.

OOC: I was thinking along the same lines. It's a little like the conversations about how WA compliance fines and such would look like for member nations. The fines wouldn't be just a slap on the wrist, they'd be significant enough to entice compliance. So, I am somewhat hesitant to try to create greater punishments, when the WA already metes out heavy punishment (from my perspective).
Junitaki-cho wrote:Definitely looking better. I still think 6(c) should be more specific than "punish" so more lax member governments can't issue a fine and look the other way, but otherwise I'm liking this more. I'll give it another look in a couple days.

3. forbids the distribution of collected genetic data by the testing entity or any other involved entity, that has collected it to any individual (or any other entity) for any reason without that individual's free and informed consent, except:


Also, it's just occurred to me that this is written such that it forbids distributing genetic data to third parties unless those third parties consent, or at least it can be credibly read that way. It needs clearer language that specifies it's the client's decision.

OOC: I admit I am not sure whether I see the same thing. The Clause specifically refers to 'individual', so unless the individual gives their consent, the data can't be distributed. Could you perhaps elaborate a little? Perhaps I'll see what you mean then :)
Last edited by Daarwyrth on Sun May 09, 2021 12:55 pm, edited 1 time in total.
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Postby Junitaki-cho » Sun May 09, 2021 3:53 pm

Daarwyrth wrote:OOC: I admit I am not sure whether I see the same thing. The Clause specifically refers to 'individual', so unless the individual gives their consent, the data can't be distributed. Could you perhaps elaborate a little? Perhaps I'll see what you mean then :)

You use "individual" in two different non-distinct ways in that clause: the second time it refers to the individual from whom the genetic data was collected, but the first time it's in reference to third party persons who should not be permitted access. Because the term is the same, it's unclear that you're changing subjects midway and so seems to pertain entirely to those third parties.
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Postby Daarwyrth » Sun May 09, 2021 4:28 pm

Junitaki-cho wrote:
Daarwyrth wrote:OOC: I admit I am not sure whether I see the same thing. The Clause specifically refers to 'individual', so unless the individual gives their consent, the data can't be distributed. Could you perhaps elaborate a little? Perhaps I'll see what you mean then :)

You use "individual" in two different non-distinct ways in that clause: the second time it refers to the individual from whom the genetic data was collected, but the first time it's in reference to third party persons who should not be permitted access. Because the term is the same, it's unclear that you're changing subjects midway and so seems to pertain entirely to those third parties.

OOC: The first 'individual' refers to any individual, it doesn't refer to the testing entities mentioned earlier. It states that the testing entities can't distribute any genetic data to individuals or entities, without an individual's consent for it to be distributed. I'm trying to see what you're saying in the text, but I feel I'm coming up short. I'll confer with Tinhampton on this and perhaps that'll make the coin drop for me :)

EDIT: I have changed the sentence structure the tiniest bit in Clause 3, does that remedy the issue?
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Daarwyrth
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Inoffensive Centrist Democracy

Postby Daarwyrth » Mon May 10, 2021 11:34 am

Junitaki-cho wrote:
Daarwyrth wrote:OOC: I admit I am not sure whether I see the same thing. The Clause specifically refers to 'individual', so unless the individual gives their consent, the data can't be distributed. Could you perhaps elaborate a little? Perhaps I'll see what you mean then :)

You use "individual" in two different non-distinct ways in that clause: the second time it refers to the individual from whom the genetic data was collected, but the first time it's in reference to third party persons who should not be permitted access. Because the term is the same, it's unclear that you're changing subjects midway and so seems to pertain entirely to those third parties.

OOC: Tinhampton devised a new approach to Clause 3, which I implemented into the current draft! Does it address the concern you had about the wording? :)
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Daarwyrth
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Postby Daarwyrth » Mon May 17, 2021 10:50 am

OOC: Any new comments or remarks on the current draft of this proposal? :)
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Daarwyrth
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Inoffensive Centrist Democracy

Postby Daarwyrth » Mon May 24, 2021 4:42 pm

Vyn Nysen: "Considering the commentary and feedback that had been provided during the vote of the previous incarnation of this resolution, any remarks or thoughts on the current resolution draft are eagerly awaited, and more than welcome."
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Postby Daarwyrth » Tue Jun 01, 2021 7:08 am

Jylien Barwald, Press Secretary of Daarwyrth's WA delegation: "Dear delegations of the World Assembly, after mutual agreement between our team and the delegation from Tinhampton, we have decided to move this proposal draft to a last call for feedback and commentary, before we will proceed to its submission. We have come to this decision in light of the relative silence regarding this proposal draft, which we cautiously assume to mean that the draft is nearing readiness for submission. If there are any last remarks or comments however, both our delegation will be more than happy to hear those."
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Postby Kenmoria » Tue Jun 01, 2021 8:26 am

“Given that the definition in 1c is used in 1b, but the definition in 1b is not used in 1c, the order of those two subclauses should be switched. In clause 3, ‘for any reason’ is unnecessary. There is also a rogue ‘sapient’ in clause 7, which I agree should be ‘individual’. Lastly, I wonder whether clause 7 would be better just as a normal ‘mandates’ or ‘compels’ clause, since minor duplication is permissible and ‘reminds’ is a little ambiguous as to the effect.”
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Postby Daarwyrth » Tue Jun 01, 2021 10:18 am

Kenmoria wrote:“Given that the definition in 1c is used in 1b, but the definition in 1b is not used in 1c, the order of those two subclauses should be switched. In clause 3, ‘for any reason’ is unnecessary. There is also a rogue ‘sapient’ in clause 7, which I agree should be ‘individual’. Lastly, I wonder whether clause 7 would be better just as a normal ‘mandates’ or ‘compels’ clause, since minor duplication is permissible and ‘reminds’ is a little ambiguous as to the effect.”

Barwald: "Both our delegations agreed to your suggestions in their entirety. As such, all of them have been worked into the newest draft. Hopefully you feel we have addressed your remarks properly? If not, please don't hesitate to inform us of such."
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Araraukar
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Corrupt Dictatorship

Postby Araraukar » Tue Jun 01, 2021 11:01 am

OOC post.

Some universal forces in my life hate me having any time for NS. So, this comes a bit late, as most of my contributions this year.

Daarwyrth wrote:a "testing entity" as any entity that collects genetic data from any individual for non-forensic, non-medical purposes,

...ok, so anyone actually doing tests is not a testing entity, but computer databases are? You may want to reconsider that.

"collected genetic data" as any genetic data that is collected from any individual by a testing entity for non-forensic, non-medical purposes, and

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.

declares that no individual shall have any genetic data collected from them for non-forensic, non-medical purposes without their free and informed consent,

...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.

if required from a law enforcement agency by a legally-binding court order, where this is necessary to determine a suspect's guilt or involvement in a crime that is being investigated,

I'd leave out the struck-out bit. I don't even think it fits the sentence.

requires that all collected genetic data distributed under Clauses 3a, 3b and 3c, or otherwise distributed with the free and informed consent of the individual it was collected from, be distributed free of charge,

This would make it impossible for labs doing the testing to charge for the testing? I don't think that's going to work.

orders all entities to whom collected genetic data has been distributed under Clauses 3a, 3b or 3c not to distribute such data to any entity not listed in one of those three clauses, except where it is collected under Clause 3c and must be shown as evidence to a court,

I don't understand this one. Are you repeating yourself for no reason or what?

mandates that member states:

This clause would work so much better if you went for singular here, with "mandates that every member state".

establish and maintain a registry which all testing entities operating within their jurisdiction shall register themselves with, and to which those entities will report to four times per year proving their compliance with Clauses 2, 3 and 4, and

"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. 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. 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?

notify those testing entities operating within their jurisdiction who refuse to comply with the provisions of Clauses 2, 3, and 4 about how to mitigate their failure to comply with such provisions, and

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.

punish said testing entities if, after receiving a notice under Clause 6b, they remain non-compliant with any of the aforementioned provisions, and

And same here. There's already an unwieldy piece of WA doing punishing. You don't need to double down on it.

finally mandates that members do not use the contents of an individual's genome as grounds to discriminate against that individual.

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.

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.
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Inoffensive Centrist Democracy

Postby Daarwyrth » Tue Jun 01, 2021 1:12 pm

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 :P 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 :)
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Araraukar
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Corrupt Dictatorship

Postby Araraukar » Tue Jun 01, 2021 1:46 pm

Daarwyrth wrote:
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,"?

OOC: No, that still doesn't say anything about actually doing the testing. You might also want to talk with Tintin if this is more about the labs (and people working there) who handle the samples and run the machinery that finds out the particulars of one's genetic code, OR whatever bureaucractic kerfuffle that happens with the results. If the latter (like it sounds like now), then you could drop "testing" from the thingy entirely as you're only concerned about the information itself.

In any case, also discuss with Tintin about adding somewhere "one's genetic information is henceforth known to be on par with other personal medical information and the protections placed on such", and then check you don't run afoul of PRA. Because given you said that's the whole point of this, the main point should definitely be included in the proposal.

As for the committee or not, you're using the registry as a committee, whether you're calling it one. Have you or Tintin ever heard of the process of accreditation? You could simply require the data handlers (or testing labs if you want to make the changes to include them) to show they have procedures in place to be compliant with the requirements, and thus are logged by the nation in the database/registry/whatever as ones allowed to go about their business, and the nation should be responsible for making sure they stay compliant. Leave out any details of exactly how they do that, because it would be going in the underpants territory to put it in the proposal.

So, shorter put: make the nation responsible for the registry of the genetic data handlers, so the nation has the power to enforce their compliance. Running it via WA is unnecessary complication, when the nations are generally able to work much quicker.

Though you might want to consider the chance that a multinational corporation might store its data in a non-member state - do you want them to be able to store WA citizens' genetic data in non-member nations, where the protections for the data might not be as stringent? I say this because it still annoys me I can't play a fun-looking Android game because it wants to store my data on a server in China and I kinda don't trust their data security...
- Linda Äyrämäki, acting ambassador in the absence of miss Leveret
Araraukar's RP reality is Modern Tech solarpunk. In IC in the WA.
Giovenith wrote:And sorry hun, if you were looking for a forum site where nobody argued, you've come to wrong one.
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Apologies for absences, non-COVID health issues leave me with very little energy at times.


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