Update Genetic Studies Only Term

[MKonopko]

Current GSO term: GSO | genetic studies only | This data use limitation indicates that use is limited to genetic studies only (i.e., no phenotype-only research)

Suggested update per Nancy Mah: "This data use limitation indicates that use is limited to genetic studies only (i.e., studies that include genotype research alone or both genotype and phenotype research, but not phenotype research exclusively)".

[MKonopko]

Vivian Ota Wang: Yes, the “no phenotype-only research” I feel is necessary to clarify that genetic studies can include genotype and phenotype research) and not exclusively phenotype research.

Pinar Alper: I understand GSO stems from the observed conditions on existing shared datasets. Can we find examples of consent clauses somewhere that would lead to a GSO annotation? Due to GSO's exclusion of phenotype-only studies and also possibly our limited understanding of its background we’ve had difficulty applying it to represent consent groups in our local cohorts. In those consents permission for genetic research is given in a separate clause, not mentioning therefore not excluding phenotype-only studies.

Nancy Mah: Perhaps the description could be further clarified to:

1. "This data use limitation indicates that use is limited to genetic studies only (i.e., studies that include genotype research alone or both genotype and phenotype research, but not phenotype research exclusively)" -or- 2. "This data use limitation indicates that use is limited to genetic studies only (i.e., phenotype research without a genetic component is not permitted)"

But also agree with Pinar that if we had some examples of where the GSO term is used, it would help to understand the meaning of this restriction (since I did not understand it correctly myself).

Stephanie Dyke: Just to confirm that’s right. GSO is a Consent Code for resources that can only be used for genetic research, so any phenotypic data could not be used for non-genetic research. NCBI had some datasets with this condition from consents allowing genetic research only.

Nancy Mah: At the risk of sounding pedantic, would this statement correctly describe Genetic Studies Only: "This data use limitation indicates that use is limited to genetic studies only (i.e., studies that include genotype research alone or both genotype and phenotype research, but not phenotype research exclusively)" which means: 1) genotype research only is allowed; 2) genotype and phenotype research together is allowed; 3) phenotype research exclusively is not allowed. Again, concrete examples of the use of GSO would really help here.

Melissa Konopko c/o DUO Leads: We can't update the original CC source definition but can evolve the derived DUO term using the clarification provided by Nancy as "This data use limitation indicates that use is limited to genetic studies only (i.e., studies that include genotype research alone or both genotype and phenotype research, but not phenotype research exclusively)".

[solideoglori]

Definition updated to: "This data use limitation indicates that use is limited to genetic studies only (i.e., studies that include genotype research alone or both genotype and phenotype research, but not phenotype research exclusively)"