Many ethical issues arise while conducting research. What happens when citizen scientists start doing research outside the scope of institutional review boards, medical ethical committees or institutional animal care and use committees? While there is a long history of researchers experimenting on themselves, there is an equally long history of vulnerable groups being taken advantaged of without proper ethical oversight. How does this history and experience dovetail with citizen scientists and researchers who are not a part of this narrative history, and may not have the experience - or ethical self-regulation - to know where to draw a line in the proverbial sand? While there are standards for traditional medical research - still too frequently violated - how are they, or should they, be applied to citizen science research? Join us as we discuss the historical context of ethical research and examine contemporary influential issues, and how this affects and applies to citizen science.
Questions:
- Who provides ethical oversight for the maker/DIY bio culture? (Who does, and who should? Are they the same people?)
- Who should be responsible for insuring that research undertaken by non-institutionally affiliated researchers is ethical?
- Is there a need for a citizens ethicist group, to provide oversight in to research?
- What are the most effective and efficient ways for a citizen scientist to educate herself about ethical regulations and issues?
- Are you obligated to tell research subjects that you may profit from their tissues and other contributions?
- Many consumers felt misled by 23andMe's consent form [URL to controversy]; how does this affect disclosure needs?
- Ownership of research is contentious in trad research; how should it be handled in citizen groups? [styrofoam URL]
- What does research - and consent - mean to different populations/communities?
- Should crowd-sourced projects be required to seek IRB approval?
- Does placing ethical constraints on DIYbio/art hamper creativity?