Session
Pacta
Nivedita Krishna, Pacta, Researcher, Asia-Pacific Group Nirmita Narasimhan, Saksham Disability, Researcher, Asia-Pacific Group Geetanjali Bisht, Pacta, Researcher, Asia-Pacific Group Krithika Sambasivan, Pacta, Researcher, Asia-Pacific Group Anagha Sasidharan, Pacta, Researcher, Asia-Pacific Group
Nivedita Krishna, Pacta, Researcher, Asia-Pacific Group
Nivedita Krishna, Pacta
Geetanjali Bisht, Pacta (will be present remotely to summarize main takeaways)
3. Good Health and Well-Being
9. Industry, Innovation and Infrastructure
10. Reduced Inequalities
Targets: The study will contribute to advancing the following SDG goals. SDG 3: Good Health and Well-Being With big data sharing happening across platforms and lack of transparency in how the data is being used, persons with disabilities will face greater vulnerabilities that could affect their well-being and access to required services. For example, Insurance companies would be willing to buy health data tracked from a running app, cardio vascular data from a health app and food ordering data to arrive at health risks that can be used to determine the insurance premium in a highly individualized manner, without a person even knowing what goes on at the backend. Therefore, informed consent becomes crucial for persons with disabilities who face marginalization on different counts including economic hardships. SDG 9: Reduced Inequalities At the level of the website access: Consent for data sharing often blocks further access to websites. Many websites are fundamentally inaccessible to those with disabilities. When consent is informed and accessible as a starting point, the internet can become equitable and therefore, reduce internet usage inequalities. At the level of data sharing: A conscious effort to be transparent, have ethical data sharing and use practices by tech-companies will reduce the inequalities that can arise due to inadvertent or conscious consent provided by persons with disabilities. SDG 10: Industry, Innovation and Infrastructure Ensures that digital infrastructure is inclusive for all abilities. Allows for innovations from digital markets to be transparent, anti-competitive, and equitable to persons with disabilities through the use of their data.
Presentation with PowerPoint Slides that will be accessible to all participants.
The session will present findings from a study conducted to understand digital consent practices of persons with disabilities and the challenges faced by them within the Indian context. The study is undertaken to develop universal user-centric consent frameworks to ensure that persons with disabilities are "not left behind" in the cyberspace. Below is a brief description of the project. Globally, conversations around digital privacy, data protection, data-use transparency, and consent have gained momentum. Several countries have attempted to regulate these new issues that have arisen due to big data sharing to protect citizens' rights. Historically, persons with disabilities (PwDs) have been marginalized and yet again today, conversations around digital data consent and data protection have not taken into consideration this population. India, with it's new Digital Personal Data Protection (DPDP) Act, 2023, has consciously included persons with disabilities rights to ensure protection of their rights in the new digital age. However, the law itself lacks clarity on the data sharing consent mechanisms for PwDs and assumes the role of the lawful guardian, wherever present, to act on behalf of the person. Such a framing of the law is limiting and can lead to challenges in implementation given the diverse needs of persons with disabilities. Therefore, Pacta and Saksham Disability, India undertook a study to 1. To understand the difficulties faced by PwDs in navigating the internet. 2. To contour the perceptions, attitudes, and experiences of PwDs in relation to consent for sharing data. 3. To make the ideas of consent, and its legal standing and implications accessible and understandable to PwDs. 4. To address the limitations of the DPDP on provisions related to PwDs. 5. To develop a user-centric consent framework for data pertaining to PwDs that can be adopted by websites and web-based applications. The study is currently underway. Our study results will help 1. understand the unique challenges faced by PwDs in using the internet, 2. what data sharing consent means to them and the challenges around digital consent, as well as 3. provide a universal user-centric consent framework for PwDs in the digital space.
Not applicable since the entire session will be in-person as mentioned in the description of the session. Organizer will facilitate a way for the rapporteur to participate such that note-taking will be enabled at their end.