Regulation of professional clinical trial volunteers in New Zealand

<p>This paper aims to form a starting point for a discussion of the regulation of paid clinical research volunteers (professional volunteers) in New Zealand. It will argue that professional volunteers, who are currently unregulated as a class of research participants, present unique issues which are not addressed by existing regulation. The major arguments will be that: by restricting the value of financial compensation that can be provided for volunteering in a clinical trial, existing regulation allows professional volunteers to be exploited; professional volunteers are exposed to unregulated compounded risks and it is unlikely that they are properly informed of these risks; and in failing to recognise the existence of professional volunteers, current regulation fails to address their commodification and dehumanisation. Proposals to address these issues will be evaluated through a human rights lens for consistency with the New Zealand Bill of Rights Act 1990 and the Code of Health and Disability Services Consumers’ Rights 1996. Recommendations for reform will be put forward on the basis of this analysis.</p>

Regulation of professional clinical trial volunteers in New Zealand

<p>This paper aims to form a starting point for a discussion of the regulation of paid clinical research volunteers (professional volunteers) in New Zealand. It will argue that professional volunteers, who are currently unregulated as a class of research participants, present unique issues which are not addressed by existing regulation. The major arguments will be that: by restricting the value of financial compensation that can be provided for volunteering in a clinical trial, existing regulation allows professional volunteers to be exploited; professional volunteers are exposed to unregulated compounded risks and it is unlikely that they are properly informed of these risks; and in failing to recognise the existence of professional volunteers, current regulation fails to address their commodification and dehumanisation. Proposals to address these issues will be evaluated through a human rights lens for consistency with the New Zealand Bill of Rights Act 1990 and the Code of Health and Disability Services Consumers’ Rights 1996. Recommendations for reform will be put forward on the basis of this analysis.</p>

Reliability of Data Collected by Volunteers: A Nine-Year Citizen Science Study in the Red Sea

The quality of data collected by non-professional volunteers in citizen science programs is crucial to render them valid for implementing environmental resources management and protection plans. This study assessed the reliability of data collected by non-professional volunteers during the citizen science project Scuba Tourism for the Environment (STE), carried out in mass tourism facilities of the Red Sea between 2007 and 2015. STE involved 16,164 volunteer recreational divers in data collection on marine biodiversity using a recreational citizen science approach. Through a specifically designed questionnaire, volunteers indicated which of the seventy-two marine taxa surveyed were observed during their recreational dive, giving an estimate of their abundance. To evaluate the validity of the collected data, a reference researcher randomly dived with the volunteers and filled in the project questionnaire separately. Correlation analyses between the records collected by the reference researcher and those collected by volunteers were performed based on 513 validation trials, testing 3,138 volunteers. Data reliability was analyzed through 7 parameters. Consistency showed the lowest mean score (51.6%, 95% Confidence Interval CI 44.1–59.2%), indicating that volunteers could direct their attention to different taxa depending on personal interests; Percent Identified showed the highest mean score (66.7%, 95% CI 55.5–78.0), indicating that volunteers can correctly identify most surveyed taxa. Overall, results confirmed that the recreational citizen science approach can effectively support reliable data for biodiversity monitoring, when carefully tailored for the volunteer skills required by the specific project. The use of a recreational approach enhances massive volunteer participation in citizen science projects, thus increasing the amount of sufficiently reliable data collected in a reduced time.

A questionnaire study of the negative outcomes for UK health professional volunteers in low and middle income countries

IntroductionPast research has reported considerable benefits of international health professional volunteering for British healthcare professionals; however, there are also some negative outcomes reported. Negative outcomes reportedly happen on a personal, professional and organisational level. However, there is little evidence of the frequency they might occur.MethodsWe aimed to understand what the negative outcomes of health professional volunteering in low-income and middle-income countries were, and how frequently they occurred, in an opportunistic sample of UK health professionals. We used a questionnaire developed using potential negative outcomes reported in the peer-reviewed papers. We conducted secondary analysis on cross-sectional questionnaire data from 222 healthcare professionals.ResultsThis research provides an indication of the frequency that negative outcomes might occur. Post hoc analyses revealed that some outcomes were experienced by the majority of health professional volunteers, for example, lack of formal recognition (131/169, 78%) and financial cost (92/169, 68%). While others happened less, for example, a reliance on agency or locum work (12/169, 7%) and loss of pension (31/169, 18%).ConclusionThe outcomes reported in this research quantify some of the concerns that have been raised in previous literature. Negative outcomes might be associated with certain features of volunteering and further research is needed to prospectively compare different features. Organisers of volunteering opportunities should be aware of the potential negative outcomes and engage with the research into negative outcomes to generate and apply findings about minimising potential negative outcomes, carefully balancing these against the needs of the host country.

Scaling up and rolling out through the Web

The purpose of this paper is to investigate online public participation and engagement in science through crowdsourcing platforms. In order to fulfil this purpose, this paper will use the crowdsourcing platform Zooniverse as a case study, as it constitutes the most prominent and established citizen science platform today. The point of departure for the analysis is that Zooniverse can be seen as a “platformization” of citizen science and scientific citizenship. The paper suggests that the mobilisation of individuals who participate and engage in science on the Zooniverse platform takes place through an epistemic culture that emphasises both authenticity and prospects of novel discoveries. Yet, in the process of turning “raw” data into useable data, Zooniverse has implemented a framework that structures the crowd, something that limits the sort of participation that is offered on the platform. This limitation means that the platform as a whole hardly be seen as fostering a more radical democratic inclusion, for example in the form of a co-production of scientific knowledge, that dissolves the institutional borders between scientists and non-professional volunteers.