0202208091036
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DNA Voices Brazil: Citizen Science & Medicine 6p Platform - Pilot-Study: Sporadic And Familial Thyroid Cancers Description: This Brazilian citizen science initiative aligns the knowledge and experiences of all people with/without professional training in research and those with a strong interest in the generation and use of sensitive personal genomic data with medical relevance.
By uniting science and genetic engineering tools with the general public, we will give a voice to the oral stories of life narrated that come together in one: that of knowledge generated by everyone for everyone.
STARDIT ID:
STARDIT ID:
0202208091036
Dates
State ongoing
Start 2023-01-02
Form updated 2024-12-12
Location
Brazil
Aims
Involve the public in genomic research
Category
research
Inputs
individual
Maria Sharmila Alina de Sousa (link)
ID: 0000-0001-5806-3790
Task: Project initiator, Associate researcher
funding
(link)
Funded with the financial support of the Brazilian Ministry of Health , via a joint call with CNPq - National Council for Scientific and Technological Development , and the institutional support of EPM - Escola Paulista de Medicina and HSP - Hospital São Paulo on the São Paulo campus of Unifesp - Universidade Federal de São Paulo
Outputs and impacts
knowledge translation
State: Completed
Start: 2024-09-03
End 2024-09-05
Workshops
Start: 2024-09-03
End 2024-09-05
Impact: Improved understanding of personal and sensitive data
On September 3rd and 5th, 2024, we welcomed 105 9th grade students from a state school in São Paulo to the Citizen Scientist for a Day workshops , which were also part of the 1st Brazilian Citizen Science Meeting as selected local events . These students supported us in the creation of the DNA Brazil voices , with suggestions on how to improve it, and by making themselves available in the co-production* of materials in different formats to support us in tackling misinformation* and hyperinformation (in the context of the infodemic* ) on basic concepts in human and medical genetics/genomics, citizen science* and precision public health - themes that we developed in our pilot study on genomic public health in the SUS. We also share learnings about what constitutes sensitive personal data* , according to Law No. 13,709 (August 14, 2018) , and its importance in the generation and use of sensitive personal health data (genomics) in research and health practices. These workshops are a space for exchanging knowledge on basic concepts in human and medical genetics and genomics, citizen science and health research to foster the culture of citizen science , produce, implement and monitor the actions of DNA Voices (Brazil) with representatives of the Brazilian population in the Citizen Scientist for a Day workshops - co-production.