Citizen Science for Biomedical Research and Contributive Justice
Authors: Cristian Timmermann
Journal: The American Journal of Bioethics (2019)

Engaging citizens in science projects has a number of benefits in terms of improving scientific outcomes and adjusting research to develop innovative solutions that are likelier to be used.Yet the emphasis on the epistemic benefits of Citizen Science projects and its risks, such as exploitation and a lack of benefit-sharing, a failure to sufficiently inform participants of possible hazards and privacy issues, and unacknowledged authorship, which we can find in Wiggins and Wilbanks (2019), should not shift to the background important justice-related interests regarding increasing participation, in particular as a prerequisite to providing the human right to participate in science (Timmermann 2014, Vayena andTasioulas 2015).Beside the social interest in benefiting from scientific advancement-due to its major role in improving welfare-and keeping scientific practice within ethical boundaries, we need to acknowledge scientific participation to be very much in the interests of society.To systematically assess the multiple advantages of increased participation in Citizen Science projects we can draw upon the concept of contributive justice.The concept has received renewed interest in demanding equality of opportunity in accessing meaningful work and in being in a position to make a contribution to society according to one's abilities (Gomberg 2007, Timmermann 2018).Under such a framework, we can identify multiple advantages of participatory research environments for individuals and society, such as: (1) the intrinsic benefits of participation, (2) the opportunity to learn skills, (3) empowerment, allowing people to contribute to social welfare, (4) shifting positions of dependency to mutual influence, and (5) social recognition.Facilitating participation allows people to become part of a community, to interact with peers, acquire knowledge, develop new skills and make use of these skills for a socially important endeavor.The acquisition and further development of skills and knowledge is often perceived as self-rewarding, especially when a certain level of mastery is reached.The development of skills also opens up new possibilities for interaction.For instance, as Wiggins and Wilbanks (2019) point out, data science skills allow people to participate in many of the current biomedical science projects.Participation allows people to be involved in shaping their future by assisting in the development of innovative solutions.It gives people an active role, instead of being a mere spectator in this highly influential sphere of society.People have a fundamental interest in improving their own circumstances and those of their community.Empowering citizens by developing skills, removing hurdles, fighting discrimination and opening up research projects is crucial in order to allow them to contribute towards social welfare.This is particularly important to biomedical research, due both to its immense capacity to improve welfare and the sympathetic urge to take action to aid a sick relative or friend.It may allow one to constructively channel tension and anxiety about the health of a loved one by becoming actively involved in speeding up research, something that can be particularly effective when citizens organize themselves to advance research on rare diseases (Woolley et al. 2016).