Mind the Relationship: A Multi-Layered Ethical Framework for Citizen Science in Health

There is a heated debate about what citizen science is and is not. We argue that instead of aiming at a definition of citizen science, we should reflect upon its ethical starting points. Based on our practical experiences with citizen science initiatives, we come up with an ethical framework that consists of two core values (respect and justice), five ethical desiderata (relationship between equals; recognition of each other's capacities, knowledge, and agency; reciprocity; openness for different goals; and openness for different research methods and paradigms) and two fundamental qualities (symmetry and transparency). The desiderata reflect ethically problematic practices, such as the use of citizens by academic scientists as mere sensors, and biases in the existing literature, such as labelling the projects that are initiated and led by citizens as “extreme”. The desiderata are supported by two ethical theories: care ethics and the capabilities approach. The aim of our ethical framework is to stimulate and facilitate reflection upon what needs to be considered when co-creating or assessing a citizen science initiative. Fundamentally, citizen science ought to be a humanizing endeavour unlocking the investigative capacities of humans. The ethical framework is meant to help reflect on this endeavour.</p

Mind the Relationship: A Multi-Layered Ethical Framework for Citizen Science in Health

There is a heated debate about what citizen science is and is not. We argue that instead of aiming at a definition of citizen science, we should reflect upon its ethical starting points. Based on our practical experiences with citizen science initiatives, we come up with an ethical framework that consists of two core values (respect and justice), five ethical desiderata (relationship between equals; recognition of each other's capacities, knowledge, and agency; reciprocity; openness for different goals; and openness for different research methods and paradigms) and two fundamental qualities (symmetry and transparency). The desiderata reflect ethically problematic practices, such as the use of citizens by academic scientists as mere sensors, and biases in the existing literature, such as labelling the projects that are initiated and led by citizens as “extreme”. The desiderata are supported by two ethical theories: care ethics and the capabilities approach. The aim of our ethical framework is to stimulate and facilitate reflection upon what needs to be considered when co-creating or assessing a citizen science initiative. Fundamentally, citizen science ought to be a humanizing endeavour unlocking the investigative capacities of humans. The ethical framework is meant to help reflect on this endeavour

ZelfOnderzoek Netwerk Nederland - Platform voor Burgerwetenschap rondom Gezondheid

&lt;p&gt;Mensen zijn eindeloos nieuwsgierig en onderzoekend. Ook rondom onze gezondheid. Een interesse die vaak intenser wordt als wijzelf of dierbaren ziek worden en/of met een beperking te maken krijgen. We willen gezond blijven en ons eigen herstel bevorderen. Daarom zoeken en proberen we dingen uit. We doen dan aan zelfonderzoek.&lt;/p&gt;&lt;p&gt;Zelfonderzoek is een heel natuurlijke drang van mensen. Toch is het fijn om hier ondersteuning bij te hebben. Want waar begin je met zoeken? Hoe onderzoek je? Hoe weet je of wat je ontdekt ook klopt? En als je iets vindt wat voor jou werkt, hebben anderen er dan ook wat aan?&lt;/p&gt;&lt;p&gt;Het ZelfOnderzoek Netwerk Nederland maakt zichtbaar wat er aan zelfonderzoek rondom gezondheid gebeurt in Nederland, en biedt ondersteuning aan de deelnemende communities om verder te komen.&nbsp;&lt;/p&gt;&lt;p&gt;Iedereen kan zelfonderzoek doen en zo invloed uitoefenen op zijn of haar gezondheid. En zo bijdragen aan de groei van algemene kennis over gezondheid.&lt;/p&gt;&lt;p&gt;De poster zet de opzet van ZelfOnderzoek Netwerk Nederland uiteen, met name de drie actielijnen waarop wordt ingezet: a) een online leergang over 'Zelfonderzoek, hoe doe ik dat? b) ZelfOnderzoek, hoe organiseer ik dat? en c) ZelfOnderzoek, waarom zou ik?&nbsp;&lt;/p&gt

Towards the baseline of health research infrastructure: the development of the Self Research Network Netherlands (ZONN)

&lt;p&gt;In the Netherlands, the health care system is thought to operate at different levels or lines of care. The first line of care is the general physician, the second one links to local and regional hospitals and paramedic services, the third one is embodied by the specialized academic hospitals and carecenters. Yet, increasingly, the 'zero' line of care is recognized, which is the citizen that takes care of his/her own health. Especially in the wake of healthy lifestyle management, the 'zero-line of care' is becoming more and more important.&lt;/p&gt;&lt;p&gt;In analogy of this, in this poster we present the 'zero line of health research'. We argue that the observational and experimental capacities of citizens constitute the &lt;strong&gt;baseline of health research&lt;/strong&gt;. Their research efforts lead to functional solutions for the involved citizens and to hypothesis that entail health value for others but need further exploration. Internationally, these are known under labels such as Do-it-Yourself medicine (Wexler, 2022) or Personal Science (Wolf and Groot, 2020).&lt;/p&gt;&lt;p&gt;Yet, the baseline of health research is organized in a very fragmented way. There is hardly general accessible infrastructure available regarding methodology, ethics, funding, publications or data-infrastructure (Transitieteam GROZ, 2019). At the same time, this type of research tends to have little profile among either research or health professionals. Lots of potentially rich citizen science in the health domain hence remains unused.&nbsp;&lt;/p&gt;&lt;p&gt;The poster outlines the birth of the 'Self Research Network Netherlands' (known in Dutch under the acronym of ZONN, from ZelfOnderzoek Netwerk Nederland, or ZONN). It details the learnings of different patients communities in encounters with the current health research regime, and their considerations to start building an infrastructure on their own terms. The first lines of action comprise a) an online course for patients/citizens on how to conduct self research (Personal Science); b) the identification, evaluation and development of 'workplaces for self research' and c) a dialogue model for patients and patientgroups to reflect on 'why would I /we engage in self research'.&lt;/p&gt

Mind the relationship:A multi-layered ethical framework for citizen science in health

There is a heated debate about what citizen science is and is not. We argue that instead of aiming at a definition of citizen science, we should reflect upon its ethical starting points. Based on our practical experiences with citizen science initiatives, we come up with an ethical framework that consists of two core values (respect and justice), five ethical desiderata (relationship between equals; recognition of each other's capacities, knowledge, and agency; reciprocity; openness for different goals; and openness for different research methods and paradigms) and two fundamental qualities (symmetry and transparency). The desiderata reflect ethically problematic practices, such as the use of citizens by academic scientists as mere sensors, and biases in the existing literature, such as labelling the projects that are initiated and led by citizens as “extreme”. The desiderata are supported by two ethical theories: care ethics and the capabilities approach. The aim of our ethical framework is to stimulate and facilitate reflection upon what needs to be considered when co-creating or assessing a citizen science initiative. Fundamentally, citizen science ought to be a humanizing endeavour unlocking the investigative capacities of humans. The ethical framework is meant to help reflect on this endeavour

Mind the relationship:A multi-layered ethical framework for citizen science in health

There is a heated debate about what citizen science is and is not. We argue that instead of aiming at a definition of citizen science, we should reflect upon its ethical starting points. Based on our practical experiences with citizen science initiatives, we come up with an ethical framework that consists of two core values (respect and justice), five ethical desiderata (relationship between equals; recognition of each other's capacities, knowledge, and agency; reciprocity; openness for different goals; and openness for different research methods and paradigms) and two fundamental qualities (symmetry and transparency). The desiderata reflect ethically problematic practices, such as the use of citizens by academic scientists as mere sensors, and biases in the existing literature, such as labelling the projects that are initiated and led by citizens as “extreme”. The desiderata are supported by two ethical theories: care ethics and the capabilities approach. The aim of our ethical framework is to stimulate and facilitate reflection upon what needs to be considered when co-creating or assessing a citizen science initiative. Fundamentally, citizen science ought to be a humanizing endeavour unlocking the investigative capacities of humans. The ethical framework is meant to help reflect on this endeavour