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 platform for knowledge translation and precision medicine
|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=prospective
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: 0202208091036
Dates

State ongoing
Start 2023-01-02
Form updated 2024-12-12

Report authors
Maria Sharmila Alina De Sousa (link)
0000-0001-5806-3790
Jack Nunn (link)
0000-0003-0316-3254
Checked report data and added additional data from updated website
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


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.
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