Separation-based accounts of privacy define privacy as being left alone and unaccessed. Pyrrho et al. propose a more control-based account where privacy is about having the age...

The possibilities for collecting, storing, and processing of data have increased significantly over the last decades. It has been argued that an increasing demand for health data will de...

Implantable neurotechnology devices such as Brain Computer Interfaces and Deep Brain Stimulators are an increasing part of treating or exploring potential treatments for neurological and psychiatric disorders. While only a few devices are approved, many promising prospects for future devices are under investigation. The decision to participate in a clinical trial can be challenging, given a variety of risks to be taken into consideration. During the consent process, prospective participants might lack the language to consider those risks, feel unprepared, or (...) simply not know what questions to ask. One tool to help empower participants to play a more active role during the consent process is a Question Prompt List. QPLs are communication tools that can prompt participants and patients to articulate potential concerns. They offer a structured list of disease, treatment, or research intervention-specific questions that research participants can use as support for question asking. While QPLs have been studied as tools for improving the consent process during cancer treatment, in this paper, we suggest they would be helpful in neurotechnology research, and offer an example of a QPL as a template for an informed consent tool in neurotechnology device trials. (shrink)

How do we respect the legitimate privacy interests of individuals and communities about whom data relate while maximizing data’s utility as a fundamental resource? Pyrrho, Cambraia and de Vasconcel...

Privacy must be protected for social reasons. That is what was argued in “Privacy and Health Practices in the Digital Age” (Pyrrho, Cambraia, and de Vasconcelos 2022). Versalovic, Goering, and Klei...

Allowing algorithms to guide or determine decision-making in ethically complex situations, and eventually satisfying the need for good clinical ethics consultation work, is a philosophically intere...

In the digital age individuals face key choices about whether and how to share intimate details of their lives, “images of the body, biological data in general and diagnostic information” (Pyrrho,...

Pyrrho and colleagues (2022) argue that the loss of health privacy can damage democratic values by increasing social polarization, removing individual choice, and limiting self-determination. As a remedy, the authors propose a data-regulation regime that prohibits companies from using such data for discriminatory purposes. Our commentary addresses three issues. First, we point out an additional problematic dimension of excessive health privacy loss, namely, the potential racialization of groups and individuals that it may likely contribute to. Second, we note that, in (...) our view, the authors’ argument for more regulation rests on an invidious comparison between the realistically described status quo and the idealized picture of the imagined regulatory regime that the authors briefly propose. Third, we argue that, despite existing regulations, both private and government actors frequently use private data in ways that lead to ethically problematic outcomes, especially when it comes to racialized communities. (shrink)

The concept of a communal type of privacy shared by interconnected social groups has wide applications in the healthcare field, specifically in genetic testing and genetic data privacy (Pyrrho, Cam...

In the article Privacy and Health Practices in the Digital Age, the authors describe current privacy challenges for digital health data and review the theoretical framework on privacy in the contex...