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…

With the ongoing and expanding use of willed bodies in medical education and research, there has been a concomitant rise in the need for willed bodies and an increase in the means of supplying these bodies. A relatively recent development to enlarge this supply has been the growth of for-profit willed body companies ("body brokers") in…

Coherent with mental health literacy curricula, mental health assessment and referral is embedded in Canadian educational contexts. Mental health literacy excludes the substantial scholarly critique of mental health produced by psychiatry, the disciplinary base of the field of mental health. In-school student referrals to mental health…

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…

This article introduces an accessible approach to implementing unmoderated remote research in developmental science -- research in which children and families participate in studies remotely and independently, without directly interacting with researchers. Unmoderated remote research has the potential to strengthen developmental science by: (1)…

When conceptualising knowledge gained from tapping into an internet data pool, one may question many things which can include the role of the researcher and the researched, privacy and ethics, intention, authenticity and the vastness of scope. The researcher, regardless of research intention including moral or ethical positions, must acknowledge…

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…

Despite now long-standing recognition of the value and importance of the scholarship of teaching and learning, questions continue to be raised about how to satisfy the hybrid responsibilities of teaching and research. The key message of this paper is that instructor-researchers, educational developers, and research ethics personnel should consider…