EVENTS
Organization of events
2022
2021
On 16th December 2021, Cláudia de Freitas and Ngozi Nwebonyi organized the event “CineISPUP” with the exhibition of the documentary “Coded Bias”, directed by Shalini Kantayya.
The documentary draws from the work of a M.I.T. Media Lab researcher, Joy Buolamwini, who discovered that facial recognition systems do not recognize dark-skinned faces adequately. Impelled to find out why, she uncovers some of the biases embedded into artificial intelligence, machine learning and algorithms, which introduce racial and gender discrimination in areas as varied as: housing, career opportunities, health care, credit, and education. The documentary calls for the need to implement legal structures governing the use and deployment of artificial intelligence and algorithms so as to create a form of symmetry between code owners and users. It also draws attention to the importance of involving the public in decisions regarding the application of artificial intelligence models in their daily lives through awareness raising and transparency in communication.
The event was commented by Mavis Machirori, senior researcher at the Ada Lovelace Institute.
On the 5th of May 2021, Cláudia de Freitas and Mariana Amorim organized the event “CineISPUP” with the exhibition of the documentary “The human face of big data”, directed by Sandy Smolan.
The documentary aims to unveil the promises and challenges arising from the astonishing knowledge revolution that is Big Data. It explores how massive data collection and analysis is driving innovation towards the creation of a kind of “planetary nervous system” capable of detecting, quantifying, and understanding various aspects of our daily lives. From the prediction of flu outbreaks based on the analysis of Internet searches to the reuse of personal information for surveillance purposes by some companies and governments, this documentary offers multiple examples of the benefits and risks associated with Big Data.
The event was commented by Rita Veloso, executive member of the Administration Board of Porto University Hospital Centre, and Helena Machado, Professor at the Department of Sociology and Dean of the Institute of Social Sciences of the University of Minho.
2020
2019
On the 5th of December 2020, Cláudia de Freitas and Tiago Maia organized the event "CineISPUP" with the exhibition of the film "The Immortal Life of Henrietta Lacks".
The film tells the story of Henrietta Lacks, an African-American woman who died of cervical cancer in 1951. Her cells were collected without her knowledge months before her death in order to create the first human imortal cell line (HeLa), which led to various developments for medicine and are still used today in research. The movie exhibits the repercussions of the collection and use of biological and genetic material without consent, which were fundamental for the origin of bioethics. The movie is directed by George C. Wolfe and is based on the award-winning book of Rebecca Skloot.
The event was commented by Álvaro Mendes, researcher at UnIGENE in Instituto de Investigação e Inovação em Saúde (i3S) and Mariana Amorim, researcher at EPIUnit, ISPUP.
Participation in events
2022
De Freitas C. “Public and patient perspectives about involvement in health data governance”. Conference on Public and Patient Involvement in Health Data Governance, 15 July, Porto, Portugal, 2022.
Nwebonyi N. “Public and patient participation in decisions about health data sharing, access, use and reuse”. Conference on Public and Patient Involvement in Health Data Governance, 15 July, Porto, Portugal, 2022.
Nwebonyi N, Silva S, De Freitas C. “Involvement in decision-making about health data sharing, access, use and reuse: the views of rare diseases patients and carers". IJUP - 15ª Edição do Encontro Investigação Jovem da Universidade do Porto, 4-6 Maio, 2022.
De Freitas C. “A participação de pessoas com doenças raras na governação de dados de saúde”. Dia Mundial das Doenças Raras, INSA, Lisboa, 28 Fevereiro, 2022.
Nwebonyi N, Silva S, De Freitas C. “Getting involved in decisions about health data sharing, access, use and reuse? The views of rare disease patients”. The 5th Global Public Health Conference, Online, 24-25 February, 2022.
2021
De Freitas C, Silva S, Machado H, Baptista MJ, Leão Teles E, Maia T, Amorim M. "Support for decision-making on sharing health data for research: are data counsellors relevant?". 14th European Public Health Conference, Online, 10-12 November, 2021.
De Freitas C, Silva S, Amorim M “Inclusive co-creation in health research? Involving patients and carers in the governance of health data”. 15th European Sociological Association Conference, Barcelona, Spain, 31 August-3 September, 2021.
Amorim M, Silva S, De Freitas “Sharing genetic data for research purposes: expectations and concerns by patients and carers”. 15th European Sociological Association Conference, Barcelona, Spain, 31 August-3 September, 2021.
De Freitas, C “Saúde * Cidadão * Comunidade: Construção participada e partilhada. A participação pública na governação de dados de saúde”. 9ª Conferência de Valor APAH – Associação Portuguesa de Administradores Hospitalares, 25-28 Maio 2021.
De Freitas C, Silva S, Amorim M “Public and patient involvement in the digitalization of healthcare”. IV ISA Forum of Sociology: Challenges of the 21st Century, Porto Alegre, Brazil, 23-27 February 2021.
2020
De Freitas C, Amorim M, Leão Teles E, Maia T, Machado H, Silva S. “Public preferences for involvement in the governance of health data”. The 16th World Congress on Public Health, Rome, Italy, 12-17 October 2020.
De Freitas C, Silva S, Leão Teles E, Maia T, Amorim M. “Participation in data generation and information sharing: are patient and carers willing to engage?” The 16th World Congress on Public Health, Rome, Italy, 12-17 October 2020.
Amorim M, Silva S, Maia T, De Freitas C. “Benefits and risks of sharing genetic data for research purposes: the views of patients and carers”. The 16th World Congress on Public Health, Rome, Italy, 12-17 October 2020.
2019
De Freitas C, Silva S, Maia T, Amorim M. "Public participation in health data governance: a scoping review". 12th European Public Health Conference, Marseille, France, 20-23 November 2019.
Maia T, Silva S, De Freitas C. "Solidarity and reciprocity in data governance: information sharing among gamete donors and recipients". 12th European Public Health Conference, Marseille, France, 20-23 November 2019.