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

Ethical Considerations of Using Machine Learning for Decision Support in Occupational Health:An Example Involving Periodic Workers' Health Assessments

Purpose Computer algorithms and Machine Learning (ML) will be integrated into clinical decision support within occupational health care. This will change the interaction between health care professionals and their clients, with unknown consequences. The aim of this study was to explore ethical considerations and potential consequences of using ML based decision support tools (DSTs) in the context of occupational health. Methods We conducted an ethical deliberation. This was supported by a narrative literature review of publications about ML and DSTs in occupational health and by an assessment of the potential impact of ML-DSTs according to frameworks from medical ethics and philosophy of technology. We introduce a hypothetical clinical scenario from a workers' health assessment to reflect on biomedical ethical principles: respect for autonomy, beneficence, non-maleficence and justice. Results Respect for autonomy is affected by uncertainty about what future consequences the worker is consenting to as a result of the fluctuating nature of ML-DSTs and validity evidence used to inform the worker. A beneficent advisory process is influenced because the three elements of evidence based practice are affected through use of a ML-DST. The principle of non-maleficence is challenged by the balance between group-level benefits and individual harm, the vulnerability of the worker in the occupational context, and the possibility of function creep. Justice might be empowered when the ML-DST is valid, but profiling and discrimination are potential risks. Conclusions Implications of ethical considerations have been described for the socially responsible design of ML-DSTs. Three recommendations were provided to minimize undesirable adverse effects of the development and implementation of ML-DSTs

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