It is widely assumed that researchers must normally secure informed consent from participants if research is to be ethical. But what exactly are people being asked to consent to? Most obviously, it is to supplying, or providing access to, data; but are they also agreeing that this data can be used in any way relevant to the research, or do they…

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…

Due to limited knowledge and exposure to sexual health information, refugee adolescent girls need health education programming and research studies that oftentimes require parental consent. We sought to understand the parental consent decision-making process of thirteen refugee parents from eight different countries who consented for their…

Background: While qualitative research on intellectual disability is on the rise, researchers have frequently reported that their methods bring methodological and ethical challenges. The authors advance shadowing as an alternative method to respond to these concerns. Method: The authors draw on their experiences with shadowing on the basis of two…

This report focuses on data governance at post-secondary institutions and related organizations. Data governance is defined as the formal execution and enforcement of authority over the management of data and data-related assets (Seiner, 2014). An overview of data governance at higher education institutions provides detail on elements of data…

Schools generate and maintain numerous student records, including grades, standardized test scores, disciplinary accounts, contact information, mental health records, and more. The Family Educational Rights and Privacy Act (FERPA), which applies to educational agencies and institutions that receive certain types of financial assistance from the…