Critical Intimate Computing
In this ongoing research, we address the trouble of datafication and value extraction of sensitive data in the everyday use of data-driven technologies. By exploring user perceptions, data flows, innovative design methods and disruptive technologies such as blockchain, we enquire their exploitative behavior and alert to the consequences of data extraction in relation to ethics, digital safety and human rights.
Ongoing collaborations include:
Dr Maryam Mehrnezhad, Royal Holloway London UK, expert in cybersecurity and privacy, PI of EPSRC PETRAS UK “Cyber Security and Privacy in Fertility Technologies (CyFer)” (2021-2023) generally working in cybersecurity and privacy for minority and minoritized users, including the domain of digital women’s health
Dr Kevin Gallagher, NOVA University of Lisbon, Portugal, expert in data privacy and research on topics of intimate data and LGBT+
Dr David Matos, Instituto Superior Técnico, Portugal, expert in distributed systems and exploring blockchain and associated technologies in the field of intimate women’s health
MSc supervision (IST University of Lisbon)
Diana P. Moniz (ongoing)
Inês Oliveira (co-supervision Dr Kevin Gallagher) (ongoing)
Larissa Tomaz (co-supervision Dr David Matos) (ongoing)
Publications & Presentations
In September 2023, Diana P. Moniz (Master's student at IST) presented "Intimate Data: Exploring Perceptions of Privacy and Privacy-Seeking Behaviors through the Story Completion Method" at the International Conference IFIP INTERACT 2023, York UK. Video presentation below.
View/Download the paper here.
Authors: Diana P. Moniz, Maryam Mehrnezhad, Teresa Almeida
Abstract: Privacy is a fundamental human right in the digital age. With the proliferation of intimate health technologies, such as data-driven apps and connected devices that track bodily care and sensitive topics, privacy is increasingly critical. In this paper, we explore the complexity of intimate data and user perspectives and the choices they make to protect themselves. We introduce a story completion study with 27 participants to examine individuals’ concerns about data privacy, their protective or avoidant actions, and the potential mismatches between privacy concerns and actual behaviors. We suggest future research that combines User-Tailored Privacy (UTP) and participatory threat modeling to create privacy solutions that account for users’ needs and the potential risks and harms associated with the use of their data.
In May 2021, Maryam Mehrnezhad presented "Caring for Intimate Data in Fertility Technologies" at the ACM CHI: CHI '21 Conference on Human Factors in Computing Systems.
Video teaser below.
View/Download the paper here.
Authors: Maryam Mehrnezhad and Teresa Almeida
Abstract: Fertility tracking applications are technologies that collect sensitive information about their users i.e. reproductive potential. For many, these apps are an affordable solution when trying to conceive or managing their pregnancy. However, intimate data are not only collected but also shared beyond users knowledge or consent. In this paper, we explore the privacy risks that can originate from the mismanagement, misuse, and misappropriation of intimate data, which are entwined in individual life events and in public health issues such as abortion and (in)fertility. We look at differential vulnerabilities to enquire data’s vulnerability and that of ‘data subjects’. We introduce the General Data Protection Regulation (GDPR) and how it addresses fertility data. We evaluate the privacy of 30 top ‘fertility apps’ through their privacy notices and tracking practices. Lastly, we discuss the regulations and fertility data as critical to the future design of tracking technologies and privacy rights.
This research received extensive press coverage and was presented at Fertility Conference 2022, the 15th joint fertility meeting organised by the Association of Reproductive and Clinical Scientists (ARCS), the British Fertility Society (BFS) and the Society for Reproduction and Fertility (SRF).