Research led by participants: a new social contract for a new kind of research

Vayena, Effy; Brownsword, Roger; Edwards, Sarah Jane; Greshake, Bastian; Kahn, Jeffrey; Ladher, Navjyot; Montgomery, Jonathan; O’Connor, Daniel; O’Neill, Onora; Richards, Martin; Rid, Annette; Sheehan, Mark; Wicks, Paul; Tasioulas, John

doi:10.1136/medethics-2015-102663

Cited by 72 publications

(56 citation statements)

References 13 publications

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“…Now, if we are serious about participation, we cannot fail to also recognize these more controversial incarnations of the idea of direct engagement. Using the principle of respect for autonomous agents as a normative reference point, one is in a better position to dissect the ethical value of any given form of engagement – including those that point towards forms of “disobedience” – as to their capacity to promote autonomy and expand the scope of ethically valuable interests [36, 37]. …”

Section: Discussionmentioning

confidence: 99%

Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine

Blasimme

2016

BMC Med Ethics

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Precision medicine promises to develop diagnoses and treatments that take individual variability into account. According to most specialists, turning this promise into reality will require adapting the established framework of clinical research ethics, and paying more attention to participants’ attitudes towards sharing genotypic, phenotypic, lifestyle data and health records, and ultimately to their desire to be engaged as active partners in medical research.Notions such as participation, engagement and partnership have been introduced in bioethics debates concerning genetics and large-scale biobanking to broaden the focus of discussion beyond individual choice and individuals’ moral interests. The uptake of those concepts in precision medicine is to be welcomed. However, as data and medical information from research participants in precision medicine cohorts will be collected on an individual basis, translating a participatory approach in this emerging area may prove cumbersome. Therefore, drawing on Joseph Raz’s perfectionism, we propose a principle of respect for autonomous agents that, we reckon, can address many of the concerns driving recent scholarship on partnership and public participation, while avoiding some of the limitations these concept have in the context of precision medicine. Our approach offers a normative clarification to how becoming partners in precision is compatible with retaining autonomy.Realigning the value of autonomy with ideals of direct engagement, we show, can provide adequate normative orientation to precision medicine; it can do justice to the idea of moral pluralism by stressing the value of moral self-determination: and, finally, it can reconcile the notion of autonomy with other more communitarian values such as participation and solidarity.

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Section: Discussionmentioning

confidence: 99%

Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine

Blasimme

2016

BMC Med Ethics

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“…In addition to these standard categories, Fiske et al (2019) also raise the issues of social or scientific value and scientific validity as additional concerns, noting that these are typically addressed in top-down researcher-led projects and are more likely to be problematic in community-driven projects. Vayena et al further reinforce the need for a new "social contract" for participant-led research (Vayena et al 2016).…”

Section: Beyond Belmont: Ethical Principles In Citizen Sciencementioning

confidence: 96%

The Rise of Citizen Science in Health and Biomedical Research

Wiggins

Wilbanks

2019

The American Journal of Bioethics

185

151

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Citizen science models of public participation in scientific research represent a growing area of opportunity for health and biomedical research, as well as new impetus for more collaborative forms of engagement in large-scale research. However, this also surfaces a variety of ethical issues that both fall outside of and build upon the standard human subjects concerns in bioethics. This article provides background on citizen science, examples of current projects in the field, and discussion of established and emerging ethical issues for citizen science in health and biomedical research.

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“…Analogous to the movement in other realms of citizen science, there is a growing movement toward more participant/patient involvement in research on humans, including in elds such as radiology, public health, psychology, and epidemiology [59,60]. Patients often have a better understanding of their disease and needs than medical/research professionals [61,62] and that patient involvement can help catalyze policy interventions [63]. Examples include the studies on amyotrophic lateral sclerosis initiated by PatientsLikeMe users [64], crowd-sourcing e orts like American Gut [65], and a variety of other citizen genomics e orts [66].…”

Section: Participant Involvementmentioning

confidence: 99%

Open Humans: A platform for participant-centered research and personal data exploration

Tzovaras

Arvai

Dulaney

et al. 2018

Preprint

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Background: Many aspects of our lives are now digitized and connected to the internet. As a result, individuals are now creating and collecting more personal data than ever before. This o ers an unprecedented chance for human-participant research ranging from the social sciences to precision medicine. With this potential wealth of data come practical problems (such as how to merge data streams from various sources),as well as ethical problems (such as how to best balance risks and bene ts when enabling personal data sharing by individuals). Results: To begin to address these problems in real time, we present Open Humans, a community-based platform that enables personal data collections across data streams, giving individuals more personal data access and control of sharing authorizations, and enabling academic research as well as patient-led projects. We showcase data streams that Open Humans combines (e.g. personal genetic data, wearable activity monitors, GPS location records and continuous glucose monitor data), along with use cases of how the data facilitates various projects. Conclusions: Open Humans highlights how a community-centric ecosystem can be used to aggregate personal data from various sources as well as how these data can be used by academic and citizen scientists through practical, iterative approaches to sharing that strive to balance considerations with participant autonomy, inclusion, and privacy. BackgroundResearch involving human participants, from biomedical and health research to social sciences studies, is experiencing rapid changes. The rise of electronic records, online platforms, and data from devices contribute to a sense that these collected data can change how research in these elds is performed [1,2,3,4] Among the impacted disciplines is precision medicine -

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Research led by participants: a new social contract for a new kind of research

Cited by 72 publications

References 13 publications

Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine

Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine

The Rise of Citizen Science in Health and Biomedical Research

Open Humans: A platform for participant-centered research and personal data exploration

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