Related papers: Amplifying Privacy: Scaling Up Transparency Resear…
The right to access is a great tool provided by the GDPR to empower data subjects with their data. However, it needs to be implemented properly otherwise it could turn subject access requests against the subjects privacy. Indeed, recent…
In accessibility research involving human subjects, researchers conventionally anonymize their research participants to protect privacy. However, a lack of intentionality about who to publicly acknowledge for intellectual contributions to…
In our data-centric world, most services rely on collecting and using personal data. The EU's General Data Protection Regulation (GDPR) aims to enhance individuals' control over their data, but its practical impact is not well understood.…
We need to rethink our approach to defend privacy on the internet. Currently, policymakers focus heavily on the idea of informed consent as a means to defend privacy. For instance, in many countries the law requires firms to obtain an…
Sharing clinical research data is key for increasing the pace of medical discoveries that improve human health. However, concern about study participants' privacy, confidentiality, and safety is a major factor that deters researchers from…
The European Union's General Data Protection Regulation (GDPR) strengthened several rights for individuals (data subjects). One of these is the data subjects' right to access their personal data being collected by services (data…
Data makes science possible. Sharing data improves visibility, and makes the research process transparent. This increases trust in the work, and allows for independent reproduction of results. However, a large proportion of data from…
Across academia, government, and industry, data stewards are facing increasing pressure to make datasets more openly accessible for researchers while also protecting the privacy of data subjects. Differential privacy (DP) is one promising…
Participatory Sensing is an emerging computing paradigm that enables the distributed collection of data by self-selected participants. It allows the increasing number of mobile phone users to share local knowledge acquired by their…
As information economies burgeon, they unlock innovation and economic wealth while posing novel threats to civil liberties and altering power dynamics between individuals, companies, and governments. Legislatures have reacted with privacy…
The debate on data access and privacy is an ongoing one. It is kept alive by the never-ending changes/upgrades in (i) the shape of the data collected (in terms of size, diversity, sensitivity and quality), (ii) the laws governing data…
Researchers often face the problem of needing to protect the privacy of subjects while also needing to integrate data that contains personal information from diverse data sources in order to conduct their research. The advent of…
In recent years, the amount of information collected about human beings has increased dramatically. This development has been partially driven by individuals posting and storing data about themselves and friends using online social networks…
This position statement is a response to the Office of Science and Technology Policy's Request for Information on "Equitable Data Engagement and Accountability." This response considers data equity specifically for people with disabilities.…
We need to rethink our approach to defend privacy on the internet. Currently, policymakers focus heavily on the idea of informed consent as a means to defend privacy. For instance, in many countries the law requires firms to obtain an…
We present a study of privacy attitudes and behaviors of people who are blind or low vision. Our study involved in-depth interviews with 21 US participants. The study explores their risk perceptions and also whether and how they go about…
After one year since the entry into force of the GDPR, all web sites and data controllers have updated their procedures to store users' data. The GDPR does not only cover how and what data should be saved by the service providers, but it…
The General Data Protection Regulation (GDPR) has become a touchstone model for modern privacy law, in part because it empowers consumers with unprecedented control over the use of their personal information. However, this same power may be…
Timely sharing of electronic health records (EHR) across providers is essential and significance in facilitating medical researches and prompt patients' care. With sharing, it is crucial that patients can control who can access their data…
Companies and academic researchers may collect, process, and distribute large quantities of personal data without the explicit knowledge or consent of the individuals to whom the data pertains. Existing forms of consent often fail to be…