Abstract
An increasing number of human studies are asking participants to have substantial involvement in research. Citizens in human studies may contribute to various research activities, including study design, recruitment, data interpretation, and data and sample collection. Citizen involvement in research raises novel ethical issues for human studies, because individuals have traditionally occupied the role of researcher or subject, but not both at the same time. The confluence of these two different roles in the same person poses challenges for investigators and oversight committees because legal rules and ethical guidelines focus on protecting the rights and welfare of human subjects and do not address issues that fall outside this domain, such as study design, data quality and integrity, reporting misconduct, authorship, or publication. This article examines some of these issues and makes recommendations for investigators and oversight committees.
Highlights
The research framework known as citizen science has rapidly increased in prevalence and influence in the last decade (Woolley et al 2016)
In 1994, Sharon Terry formed PXE international, a non-profit organization that advocates for and supports research on a rare genetic disease known as pseudoxanthoma elasticum (PXE), when her two children were diagnosed with the illness
The confluence of these two different roles in the same person poses challenges for investigators and oversight committees because legal rules and ethical guidelines focus on protecting the rights and welfare of human subjects and do not address issues that fall outside this domain (Rothstein et al 2015)
Summary
An increasing number of human studies are asking participants to have substantial involvement in research. Citizens in human studies may contribute to various research activities, including study design, recruitment, data interpretation, and data and sample collection. Citizen involvement in research raises novel ethical issues for human studies, because individuals have traditionally occupied the role of researcher or subject, but not both at the same time. The confluence of these two different roles in the same person poses challenges for investigators and oversight committees because legal rules and ethical guidelines focus on protecting the rights and welfare of human subjects and do not address issues that fall outside this domain, such as study design, data quality and integrity, reporting misconduct, authorship, or publication.
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
