Published November 2016
Citizen science is the term given to research that involves amateurs or non-professionals. These projects vary from contributory and collaborative ventures that typically involve the public collecting and processing data for researchers, to projects entirely devised by individuals or communities and directed towards personal or local priorities.
Are there recent scientific, legal or social developments?
Citizen science remains prominent in environmental science, and is increasingly being used in medical and biological research. Patient-led data sharing platforms continue to be popular, for example the data sharing platform patientslikeme has a network of over 400,000 people. Technology is being developed to aid citizen science in this area: Apple’s ResearchKit app, launched in 2015, is a platform for researchers to design and administer app-based studies; Google is reportedly designing a contact lens that measures glucose levels in tears; and the #BritainBreathing app which aims to track allergy sufferers in the UK was launched in March 2016.
Are there complex ethical issues?
Some view citizen science as a way to promote public engagement with science, and to empower individuals and communities to steer priority setting in research. These projects can also potentially increase productivity and diversity as well as being cost-effective. However, citizen science also raises a number of challenges, particularly in the context of medical or health research. One potential issue concerns how the risk-benefit analysis of a proposed study should be conducted and who should be responsible for this, especially when homemade technology is being used. Participant-researchers could be allowed to assess the risk themselves, emphasising respect for individual autonomy. However, there may be limits to how much risk individuals should be allowed to expose themselves to, especially if there is a possibility that their risk assessments are distorted because of their involvement, or if they could be subjected to coercion and peer pressure by keen fellow participant-researchers. Relatedly, there is the question of how to ensure that participants have given their informed consent, or whether the doctrine of consent is even appropriate in the context of participant-led research. Additionally, there is a potential conflict between the aims of researchers, and of the patients/public taking part, which may lead to issues surrounding transparency and to questions about the appropriate way to recruit participants and acknowledge or remunerate their contribution. There are also a number of issues surrounding the ownership, sharing, security and privacy of the data collected and stored online, particularly when it is personal health data.
Is there a potential policy impact?
Policy makers need to determine whether current research ethics regulation is applicable, and what unique measures citizen science (in its various forms) requires. Key questions include how to manage and ensure the security of the data collected, how to ensure regulatory oversight, and who should be responsible for this. Any research governance framework would need to strike a balance between protecting potential participant-researchers and empowering individuals who wish to pursue this research.
Is it a subject of public concern?
The citizen science web portal, Zooniverse, operated by the Citizen Science Alliance (CSA) has reportedly over 1 million registered volunteers. In the UK, awareness of citizen science projects as a way to influence change has increased, e.g. Network for Clean Air. Researchers are encouraged to recruit the public as citizen scientists, and organisations such as the British Science Association (BSA) encourage participation, which means that the public need to be aware of the ethical issues involved, their rights and responsibilities.
Is consideration timely?
In 2016 the first European Citizen Science Association Conference was held. Funding via Horizon 2020 has been announced for projects such as ‘Doing it Together Science‘ which is led by the Extreme Citizen Science (ExCiteS) project at UCL. The European SPARKS awareness raising project (2015-2018) is promoting citizens active involvement via exhibitions such as ‘Beyond the Lab‘ at the London Science Museum in summer 2016. The proposed UK care.data programme which aimed to collect patient data from across healthcare settings was halted in July 2016 after public concern and recommendations regarding health data security and consent models, but a related project by the National Information Board is going ahead.
Can the Council offer a distinctive contribution?
The scope of ethical issues relating to citizen science is recognised by organisations such as the European Citizen Science Association (ECSA) and the CSA in the US. The UK Environmental Observation Framework (UKEOF) continues to commission and produce reports and guides relating to environmental citizen science. The Council could contribute by reporting and advising on the unique ethical issues relating to the forms of citizen science being utilised in medical research – such as the contributing of personal health data, and the use of new, or homemade technology – potentially leading to a code of ethics or best-practice guide.
Possible future work topics
This is one of the topics that have been suggested as possible project areas for further investigation by the Council. These topic summaries do not aim for comprehensiveness; rather, they are intended to sign-post some of the key considerations and to provide a starting point for discussion. Each summary includes links to relevant publications on the topic.