Dataset Information

Getting to grips with wildlife research by citizen scientists: What role for regulation?

ABSTRACT: Wildlife research by citizen scientists, involving the capture and handling of animals, provides clear scientific benefits, but also potential risks to animal welfare. We explore debates about how best to regulate such work to ensure that it is undertaken in an ethical manner.We focus on the UK as a case study, drawing on qualitative research and stakeholder engagement events. We show that because trapping and marking of certain species requires minimal licensing, training and justification, some argue for increased formal regulation to minimise risks to animal welfare. However, others have reflected on the already complex regulatory landscape affecting wildlife research, and have expressed concern that introducing additional formal regulations could potentially make citizen science working with wildlife more difficult. Informal regulation could therefore offer a preferable alternative.We set out three steps that could be taken to open up conversations about ethics and regulation of wildlife-focussed citizen science, in the UK and elsewhere: (a) take stock of wildlife-focussed citizen science in terms of numbers and harms to animal welfare; (b) assess the state of formal regulations and consider reforms; and (c) consider informal regulations as alternatives or additions to formal regulations.

SUBMITTER: Palmer A

PROVIDER: S-EPMC7116685 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

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Getting to grips with wildlife research by citizen scientists: What role for regulation?

Palmer Alexandra A Reynolds S James SJ Lane Julie J Dickey Roger R Greenhough Beth B

People and nature (Hoboken, N.J.) 20201006 1

Wildlife research by citizen scientists, involving the capture and handling of animals, provides clear scientific benefits, but also potential risks to animal welfare. We explore debates about how best to regulate such work to ensure that it is undertaken in an ethical manner.We focus on the UK as a case study, drawing on qualitative research and stakeholder engagement events. We show that because trapping and marking of certain species requires minimal licensing, training and justification, som ...[more]

PMID: 33542999

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Project description:BackgroundLong-term health consequences following acute SARS-CoV-2 infection, referred to as post-COVID-19 condition or Long COVID, are increasing, with population-based prevalence estimates for adults at around 20%. Persons affected by Long COVID report various health problems, yet evidence to guide clinical decision making remains scarce.ObjectiveThe present study aimed to identify Long COVID research priorities using a citizen science approach and solely considering the needs of those affected.MethodsThis citizen science study followed an iterative process of patient needs identification, evaluation and prioritisation. A Long COVID Citizen Science Board (21 persons with Long COVID, and seven with myalgic encephalomyelitis/chronic fatigue syndrome) and a Long COVID Working Group (25 persons with Long COVID, four patients with myalgic encephalomyelitis/chronic fatigue syndrome and one relative) were formed. The study included four activities: three remote meetings and one online survey. First, Board members identified the needs and research questions. Second, Working Group members and persons affected by Long COVID (241 respondents, 85.5% with Long COVID, 14.5% with myalgic encephalomyelitis/chronic fatigue syndrome and 7.1% relatives) evaluated the research questions on a 1-5 Likert scale using an online survey. Then the Board gave feedback on this evaluation. Finally, Board members set the priorities for research through voting and discussion.ResultsSixty-eight research questions were generated by the Board and categorised into four research domains (medicine, healthcare services, socioeconomics and burden of disease) and 14 subcategories. Their average importance ratings were moderate to high and varied from 3.41 (standard deviation = 1.16) for sex-specific diagnostics to 4.86 (standard deviation = 0.41) for medical questions on treatment. Five topics were prioritised: "treatment, rehabilitation and chronic care management", "availability of interfaces for treatment continuity", "availability of healthcare structures", "awareness and knowledge among professionals" and "prevalence of Long COVID in children and adolescents".ConclusionsTo our knowledge, this is the first study developing a citizen-driven, explicitly patient-centred research agenda with persons affected by Long COVID, setting it apart from existing multi-stakeholder efforts. The identified priorities could guide future research and funding allocation. Our methodology establishes a framework for citizen-driven research agendas, suitable for transfer to other diseases.

Dataset Information

Getting to grips with wildlife research by citizen scientists: What role for regulation?

Publications

Getting to grips with wildlife research by citizen scientists: What role for regulation?

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