Concerns around comprehension and recall of consent information by research participants have typically been associated with low health and research literacy levels. In genomics research, this concern is heightened as the scientific and ethical complexities of genetics research, such as biobanking, genetic susceptibility, data sharing, and…

The Confidentiality Advisory Group (CAG) is a specialised body that advises the Health Research Authority (HRA) and the Secretary of State for Health on requests for access to confidential information, in the absence of informed consent from its owners. Its primary role is to oversee the safe use of such information and to counsel the governing…

With its wealth of readily and often publicly available information about Web users' lives, the Web has created new opportunities for conducting online research. Although digital data are easily accessible, ethical guidelines are inconsistent about how researchers should use them. Some academics claim that traditional ethical principles are…

This paper argues that specific individual informed consent and other forms of consent predicated on a right to autonomy may not in all circumstances be appropriate for the establishment and use of large data sets of health information. We suggest that there are inherent failings in such an approach, shortcomings that we analyse below. We argue…

A research project was conducted which explored LGBT (lesbian, gay, bisexual, transgender) hate crime. Participants were invited to share their narratives and personal experiences of hate crime, discrimination and violence through semi-structured interviews. The study helped us understand how people who experience 'hate' responded to, managed and…