Vulnerable data subjects

Chimpanzees as vulnerable subjects in research

Using an approach developed in the context of human bioethics, we argue that chimpanzees in research can be regarded as vulnerable subjects. This vulnerability is primarily due to communication barriers and situational factors-confinement and dependency-that make chimpanzees particularly susceptible to risks of harm and exploitation in experimental settings. In human research, individuals who a...

Vulnerable subjects? The case of nonhuman animals in experimentation.

The concept of vulnerability is deployed in bioethics to, amongst other things, identify and remedy harms to participants in research, yet although nonhuman animals in experimentation seem intuitively to be vulnerable, this concept and its attendant protections are rarely applied to research animals. I want to argue, however, that this concept is applicable to nonhuman animals and that a new ta...

Trust, vulnerable populations, and genetic data sharing

Recent policies and proposed regulations, including the Notice of Proposed Rulemaking for the Common Rule and the 2014 NIH Genetic Data Sharing Policy, seek to improve research subject protections. Protections for subjects whose genetic data is shared are critical to reduce risks such as loss of confidentiality, stigma, and discrimination. In the article 'It depends whose data are being shared:...

Vulnerable Populations: Vulnerable People

Enabling Data Subjects to Remain Data Owners

Users have become used to accepting two unfortunate consequences of complying with requests to supply personal data to service providers. Firstly, the personal data that a user supplies becomes the property of the service provider, which means that the data subject loses control over what is subsequently done with their data. Secondly, provision of services is made on an “all or nothing” basis,...