“As researchers it’s good to remember that human beings are not data points… You are entering into a relationship with another human being and you need to figure out what the benefits are for both of you in terms of this relationship, on a human basis, not only on a scientific data producing basis.” – Sharyle Patton, Biomonitoring participant and Silent Spring Institute adviser and co-investigator
From the first steps of shaping a research agenda through the final stages of sharing results and translating research findings into public health action, Silent Spring Institute partners with community organizations and study participants to tackle problems – like household environmental contaminants – that affect whole communities. This innovative collaborative approach embodies our core values of research, community, and action. It also raises unique ethical challenges regarding the rights of participants and the sharing of valuable research data.
Silent Spring Institute is breaking new ground in the emerging field of ethics in community engaged research, investigating questions such as:
- How can scientists and participants co-own collected data?
- How can we make personal results useful to participants if their health significance and/or remedies are unknown?
- How can personal data (such as environmental exposure measurements) be shared to advance scientific knowledge while also protecting the identity of study participants?