Conference
Genomic Data Access in the Era of Personal Privacy - challenges and opportunities
| العنوان: | Genomic Data Access in the Era of Personal Privacy - challenges and opportunities |
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| المؤلفون: | Sumir Panji, Nicola J. Mulder |
| سنة النشر: | 2020 |
| المجموعة: | University of Cape Town: Figshare |
| مصطلحات موضوعية: | Bioinformatics, African Genomics, H3Africa, H3ABioNet, Common Infrastructure for National Cohorts in Europe, Canada and Africa (CINECA), Global Alliance For Genomic Health (GA4GH), Data Access Committee (DAC), Human genomic data privacy, Data Use Ontology (DUO), Data Use Researcher Identity (DURI), FAIR, Open Data |
| الوصف: | This presentation was given at UCT's Open Data Day on 6 March 2020. It covers the challenges and opportunities with regard to the sharing of genomics data. There are limits to what can be shared in terms of genomic data. The actual sequence data consists of a string of 4 letters – DNA. The accompanying data or meta-data such as a phenotype that using the NIH definition is any clinical measurement taken is what will add value and power to any analysis. However, a combination of some phenotypes will make it possible to identify populations and individuals, especially in cases of rare genetic diseases. The more data that is pooled together and analyzed will provide more power to detect minor polygenic differences which are usually linked to non-communicable diseases such as type 2 diabetes, cardiovascular diseases, cancer, obesity, etc. A Data Access Committee (DAC) is comprised of members who are experts in their fields that review applications to access data. If there are 1,000 requests for data, the DAC will have to review each one and the fact that they are experts in their fields, means they have very little spare time. Usually, a DAC has to go through the data request forms to see if they are in line with the data sharing policy for the project, this can be quite tricky as there is no clear cut way of checking so we will have to go through each data request. Hence, there needs to be some way of automating the process for data requests to be evaluated. To address these problems, the GA4GH has created an eco-system of tools and a couple of driver projects, such as CINECA to implement these technologies at scale. Some of the challenges to create an eco-system that is secure and accessible with the right credentials include finding the data on multiple infrastructures around the world. Having the right credentials to be able to log in and request or access data. Harmonizing datasets across various consortia and ethical and legal frameworks that applicable across national boundaries. One of the projects within the ... |
| نوع الوثيقة: | conference object |
| اللغة: | unknown |
| Relation: | https://figshare.com/articles/presentation/Genomic_Data_Access_in_the_Era_of_Personal_Privacy_-_challenges_and_opportunities/11999919 |
| DOI: | 10.25375/uct.11999919.v1 |
| الاتاحة: | https://doi.org/10.25375/uct.11999919.v1 https://figshare.com/articles/presentation/Genomic_Data_Access_in_the_Era_of_Personal_Privacy_-_challenges_and_opportunities/11999919 |
| Rights: | CC BY 4.0 |
| رقم الانضمام: | edsbas.8F387D30 |
| قاعدة البيانات: | BASE |
| DOI: | 10.25375/uct.11999919.v1 |
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