0202208091036: Difference between revisions
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{{item | {{item | ||
|title=DNA Voices Brazil: Citizen Science & Medicine 6p Platform - Pilot-Study: Sporadic And Familial Thyroid Cancers | |||
|type_parameter=research | |type_parameter=research | ||
|description_parameter=a | |description_parameter=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. | ||
|aim_parameter={{aim parameter}} | |||
|state_parameter= | 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. | ||
|aim_parameter={{aim parameter|Involve the public in genomic research}} | |||
|state_parameter=ongoing | |||
|start_date_parameter=2023-01-02 | |start_date_parameter=2023-01-02 | ||
|location_parameter=Brazil | |location_parameter=Brazil | ||
|location_link=No | |location_link=No | ||
|URL_parameter=https://sites.google.com/unifesp.br/vozesdodna | |||
|author_parameter={{author parameter | |author_parameter={{author parameter | ||
|aut_nam=Maria Sharmila Alina De Sousa | |aut_nam=Maria Sharmila Alina De Sousa | ||
|aut_ids=0000-0001-5806-3790 | |aut_ids=0000-0001-5806-3790 | ||
|aut_url=https://orcid.org/0000-0001-5806-3790 | |aut_url=https://orcid.org/0000-0001-5806-3790 | ||
|aut_con=contact | |||
}}{{author parameter | |||
|aut_nam=Jack Nunn | |||
|aut_ids=0000-0003-0316-3254 | |||
|aut_url=http://orcid.org/0000-0003-0316-3254 | |||
|aut_tas=Checked report data and added additional data from updated website | |||
|aut_con=non contact | |aut_con=non contact | ||
}} | |||
|contributor_parameter={{contributor parameter | |||
|con_typ=individual | |||
|con_nam=Maria Sharmila Alina de Sousa | |||
|con_tas=Project initiator, Associate researcher | |||
|con_url=https://orcid.org/0000-0001-5806-3790 | |||
|con_ids=0000-0001-5806-3790 | |||
|con_dates=No | |||
}} | |||
|input_parameter={{input parameter | |||
|inp_typ=funding | |||
|inp_des=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 | |||
|inp_url=https://sites.google.com/unifesp.br/vozesdodna | |||
}} | |||
|output_parameter={{output parameter | |||
|out_typ=knowledge translation | |||
|out_out=Workshops | |||
|out_state=Completed | |||
|out_dates=Yes | |||
|out_sta=2024-09-03 | |||
|out_end=2024-09-05 | |||
|out_imp=Improved understanding of personal and sensitive data | |||
|out_des=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. | |||
}} | }} | ||
}} | }} | ||
Latest revision as of 11:55, 12 December 2024
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.