Informed Consent and the Research Process: Following Rules or Striking Balances?

Gaining informed consent from people being researched is central to ethical research practice. There are, however, several factors that make the issue of informed consent problematic, especially in research involving members of groups that are commonly characterised as \'vulnerable\' such as children and people with learning disabilities. This paper reports on a project funded by the UK Economic and Social Research Council (ESRC) which was concerned to identify and disseminate best practice in relation to informed consent in research with six such groups. The context for the study is the increased attention that is being paid to the issue of informed consent in research, not least because of the broad changes taking place in research governance and regulation in the UK. The project involved the analysis of researchers\' views and experiences of informed consent. The paper focuses on two particular difficulties inherent in the processes of gaining and maintaining informed consent. The first of these is that there is no consensus amongst researchers concerning what comprises \'informed consent\'. The second is that there is no consensus about whether the same sets of principles and procedures are equally applicable to research among different groups and to research conducted within different methodological frameworks. In exploring both these difficulties we draw on our findings to highlight the nature of these issues and some of our participants\' responses to them. These issues have relevance to wider debates about the role of guidelines and regulation for ethical practice. We found that study participants were generally less in favour of guidelines that regulate the way research is conducted and more in favour of guidelines that help researchers to strike balances between the conflicting pressures that inevitably occur in research.Informed Consent; Research Ethics; Regulation of Research; Research Governance; Professional Guidelines

Does Communities that Care work? An evaluation of a community-based risk prevention programme in three neighbourhoods

Does Communities that Care work? An evaluation of a community-based risk prevention programme in three neighbourhood

NCRM Methods Review Papers NCRM/001 Informed Consent in Social Research: A Literature Review

This paper comprises a literature review outlining the current issues and debates relating to informed consent in social research. Given the rapidly changing nature of the field it draws primarily on literature published between 1998-2004. However, it includes some papers and books published prior to this where these are viewed as having made an important contribution to issues and debates around informed consent. The paper focuses primarily on consent in relation to qualitative research comprising ‘traditional’ methods of data collection, such as interviews and observation. It does not does not engage with the many complex ethical issues relating to research using visual methods and new digital technologies nor does it engage with the issues of consent in relation to quantitative research both of which, while important, are beyond the scope of this paper. The paper explores issues of informed consent in qualitative social research in general but focuses specifically on research conducted with so called ‘vulnerable’ groups (to include children, older people and people with a range of physical and mental health problems) in that issues of consent are perceived as being particularly pertinent when conducting research with these groups. This review outlines the regulatory, ethical and legal context for consent in social research and the operationalisation of informed consent in practice. This review was conducted as part of a project funded within the ESRC Research Methods Programme 2002-2004

Anonymity and Confidentiality

This paper focuses on confidentiality and anonymity and explores the ways in which these issues are managed by researchers. It draws primarily on data collected from a study funded as part of the ESRC Research Methods Programme focusing on researchers’ views and experiences relating to the issue of informed consent in research. The focus is on these issues in relation to qualitative research

Visual Ethics: developing good practice

This project aimed to capitalise on the NCRM’s networks and innovative work in visual methods to i) identify visual researchers’ everyday practice in relation to ethics; ii) map the ethical issues and challenges encountered by visual researchers ; iii) identify the strategies adopted to manage visual ethics; iv) gain an understanding, and identify exemplars, of good ethical practice in visual research; v) identify any particularly problematic or seemingly ‘unresolvable’ ethical concerns that would benefit from further and more detailed exploration. It was intended that a resource on good ethical practice for visual researchers would be developed from the project

Aerodynamic roughness parameters in cities: inclusion of vegetation

A widely used morphometric method (Macdonald et al. 1998) to calculate the zero-plane displacement (zd) and aerodynamic roughness length (z0) for momentum is further developed to include vegetation. The adaptation also applies to the Kanda et al. (2013) morphometric method which considers roughness-element height variability. Roughness-element heights (mean, maximum and standard deviation) of both buildings and vegetation are combined with a porosity corrected plan area and drag formulation. The method captures the influence of vegetation (in addition to buildings), with the magnitude of the effect depending upon whether buildings or vegetation are dominant and the porosity of vegetation (e.g. leaf-on or leaf-off state). Application to five urban areas demonstrates that where vegetation is taller and has larger surface cover, its inclusion in the morphometric methods can be more important than the morphometric method used. Implications for modelling the logarithmic wind profile (to 100 m) are demonstrated. Where vegetation is taller and occupies a greater amount of space, wind speeds may be slowed by up to a factor of three

A Critical Role for Muscle Ring Finger-1 in Acute Lung Injury–associated Skeletal Muscle Wasting

Rationale: Acute lung injury (ALI) is a debilitating condition associated with severe skeletal muscle weakness that persists in humans long after lung injury has resolved. The molecular mechanisms underlying this condition are unknown

[SWI+], the Prion Formed by the Chromatin Remodeling Factor Swi1, Is Highly Sensitive to Alterations in Hsp70 Chaperone System Activity

The yeast prion [SWI+], formed of heritable amyloid aggregates of the Swi1 protein, results in a partial loss of function of the SWI/SNF chromatin-remodeling complex, required for the regulation of a diverse set of genes. Our genetic analysis revealed that [SWI+] propagation is highly dependent upon the action of members of the Hsp70 molecular chaperone system, specifically the Hsp70 Ssa, two of its J-protein co-chaperones, Sis1 and Ydj1, and the nucleotide exchange factors of the Hsp110 family (Sse1/2). Notably, while all yeast prions tested thus far require Sis1, [SWI+] is the only one known to require the activity of Ydj1, the most abundant J-protein in yeast. The C-terminal region of Ydj1, which contains the client protein interaction domain, is required for [SWI+] propagation. However, Ydj1 is not unique in this regard, as another, closely related J-protein, Apj1, can substitute for it when expressed at a level approaching that of Ydj1. While dependent upon Ydj1 and Sis1 for propagation, [SWI+] is also highly sensitive to overexpression of both J-proteins. However, this increased prion-loss requires only the highly conserved 70 amino acid J-domain, which serves to stimulate the ATPase activity of Hsp70 and thus to stabilize its interaction with client protein. Overexpression of the J-domain from Sis1, Ydj1, or Apj1 is sufficient to destabilize [SWI+]. In addition, [SWI+] is lost upon overexpression of Sse nucleotide exchange factors, which act to destabilize Hsp70's interaction with client proteins. Given the plethora of genes affected by the activity of the SWI/SNF chromatin-remodeling complex, it is possible that this sensitivity of [SWI+] to the activity of Hsp70 chaperone machinery may serve a regulatory role, keeping this prion in an easily-lost, meta-stable state. Such sensitivity may provide a means to reach an optimal balance of phenotypic diversity within a cell population to better adapt to stressful environments

"Not 'radical', but not 'kailyard' either:The Paisley Community Development Project reconsidered."

Accounts of the Community Development Projects (CDPs) that ran as experimental interventions in twelve deprived UK localities in the 1970s concentrate on those projects identified as 'radical'. Focusing on the often-neglected history of Paisley's CDP, this article extends recent critical re-evaluations of how CDPs have been characterised. Ferguslie Park in Paisley was the most disadvantaged of the CDP areas on several criteria, and the only CDP to be based in an outer-urban area, as well as being distinct in further ways. This influenced how the CDP team devised its community development strategy, which is misunderstood when treated as embodying a parochial 'kailyard' mentality. Paisley’s CDP has continuing relevance to debates about area-based policy and public involvement in research as they are rehearsed in new contexts