Launch of ‘Citizenbiomedicine’ project: Social, Ethical and Regulatory aspects of ‘Citizen Science’ in biomedicine

We are delighted to announce the launch of the blog  ‘Social, ethical and regulatory aspects of ‘Citizen Science’ in biomedicine and health care’ . The blog is part of the project ‘Citizen Science’ which is based at King’s SSHM and Universitaetsklinikum Schleswig-Holstein. Lorenzo Del Savio, who is visiting fellow at SSHM, will update the blog with news, reviews, and guest pieces.

Who we are:

Prof. Alena Buyx (UKSH – Principal Investigator)

Prof. Barbara Prainsack (KCL – Principal Investigator)

Dr. Lorenzo Del Savio (UKSH/KCL – Postdoc fellow and editor of the blog)

What we do:

Dr Lorenzo Del Savio

Dr Lorenzo Del Savio

Science has always taken place inside and outside the boundaries of established scientific institutions. While some forms of ‘citizen science’ (CS) date back to amateur natural history in the 18th and 19th century, opening up the practice of science to wider ranges of people is a result of deep-seated socio-technical changes. Online platforms in particular have facilitated the sharing of information, expertise, and tasks. The production of a wealth of personal data — e.g. with mobile devices and wearables —  is increasingly seen as a strategic asset for research, especially in the life and health sciences. Countercultures and the Open Science movement are challenging the current organization of science and what are often perceived as its ‘elitist’ practices and modes of funding. There is also experimentation with new legal arrangements regarding intellectual property, patents, and the access to knowledge. Due to the long tradition of patient activism, and due to currently emerging ‘big data’-approaches in biomedicine and the health sciences, CS is seen by many as potentially very helpful in these fields. Data and sample collection, the surveillance of epidemics, and even the design of clinical trials and analyses are being devolved to patients and the ‘crowd’.

Early literature on public participation in science focused on the educational opportunities of citizens’ engagement and on democratic concerns regarding the responsiveness of science to the needs, preferences and values of citizens. Within the theoretical parts of the project, we will build on this literature; mapping how CS overlaps with other emerging phenomena and concepts such as lifetracking, patient self-care, etc. We will look at underlying social and technological developments and trends, and examine how CS is sometimes expected to produce better knowledge than ‘traditional’ science, how ‘better’ is defined in the first place, and what such debates can tell us about shifting understandings of ‘traditional’ and ‘emerging’ forms of science.

As part of the more empirical parts of the project, we will investigate the structure, focus, and impact of CS initiatives in biomedicine and society and analyse the various forms of citizens’ involvement with scientific practice, using a case study approach. Aspects to consider will include the degree of agency, participation and control that ‘citizen scientists’ have in research planning and design, the production and evaluation of scientific results, and the public and commercial use of the knowledge they contribute to produce. Based on both our findings and our theoretical analysis, we will then discuss ethical and regulatory implications of the emerging field of CS in biomedicine and health science.
Please follow the ‘Citizen Science’ blog by clicking on the button ‘Follow the blog’. Feel free to contribute with your thoughts, comments, proposals!

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1 Response to Launch of ‘Citizenbiomedicine’ project: Social, Ethical and Regulatory aspects of ‘Citizen Science’ in biomedicine

  1. Laurence Cox says:

    There is one aspect of ‘citizen science’ that we should address, but which tends to get ignored. The structure of academia is such that there is a ‘leaky pipeline’ in which people exit academia, after a Bachelor’s or Master’s degree, or after a PhD, or after several years of post doctoral work, when for various reasons they decide not to continue. Particularly for those who have completed a PhD and especially for those who have completed post-doctoral work and have demonstrated a capability for innovative throught, this is a loss of capability. If we look at the Royal Society’s ‘The Scientific Century’ and particularly Figure 1.6, only 30% of new PhDs find post-doctoral positions; only 3.5% gain permanent research positions; and only 0.45% become professors. Finding a way through citizen science to continue involving those who are leaking out of the pipeline could allow a way back into academia for those who want it and also help to address the gender imbalance. The Royal Society quotes 35% of female researchers in science-related disciplines, but only 11% of professors. While there are programmes like Athena-SWAN these only address the issue for people still in academia and not those who have left.

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