Extend human page by different types of data acquisition #1266
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vildead
requested review from
DanFaria,
pinarpink,
bianchini88 and
lauportell
as code owners
The change will be submitted in new MR |
tiny wording/grammar fixes
Nazeeefa
reviewed
May 31, 2023
pages/your_domain/human_data.md
Outdated
| * In most cases, you should get **informed consents** from your research subjects. | ||
| * The [Global Alliance for Genomics and Health (GA4GH)](https://www.ga4gh.org) has recommendations for these issues in their [GA4GH regulatory and ethical toolkit](https://www.ga4gh.org/genomic-data-toolkit/regulatory-ethics-toolkit/), see for instance the [Consent Clauses for Genomic Research](https://drive.google.com/file/d/1O5Ti7g7QJqS3h0ABm-LyTe02Gtq8wlKM/view?usp=sharing). | ||
| * The acquisition of data must be legal. | ||
| * **Receiving data/samples directly from data subjects** requires in most cases **informed consents**. | ||
| - An informed consent is an agreement from the research subject to participate in and share personal data for a particular purpose. It shall describe the purpose and any risks involved (along with any mitigations to minimise those risks) in such a way that the research subject can make an informed choice about participating. It should also state under what circumstances the data can be used for the initial purpose, as well as for later re-use by others. | ||
| - Consider describing data use conditions using a machine-readable formalised description such as the Data Use Ontology [DUO](https://github.com/EBISPOT/DUO). This will greatly improve the possibilities to make the data FAIR later on. |
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I think the link for DUO mentioned here is https://github.com/EBISPOT/DUO not necessary, as it is mentioned later on under solutions. If we want to add link here then it should be pointed to a general resource on DUO or explicity mention that it's (GA4GH) Data Use Ontology (DUO).
bedroesb
approved these changes
Aug 22, 2023
pinarpink
approved these changes
Aug 23, 2023
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