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:
- defines, for the purposes of this resolution:
- an "individual" as a natural person who is not deceased,
- a "testing entity" as any entity that collects genetic data from any individual for non-forensic, non-medical purposes,
- "collected genetic data" as any genetic data that is collected from any individual by a testing entity for non-forensic, non-medical purposes, and
- declares that no individual shall have any genetic data collected from them for non-forensic, non-medical purposes without their free and informed consent,
- 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:
- to the testing entity itself and the individual from whom that genetic data was collected,
- to laboratories for the sole purpose of analysing that genetic data, or
- 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,
- 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,
- 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,
- mandates that member states:
- 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
- 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
- punish said testing entities if, after receiving a notice under Clause 6b, they remain non-compliant with any of the aforementioned provisions, and
- 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.