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Adapting Standards: Ethical Oversight of Participant-Led Health Research

Just out in today’s edition of PLoS Medicine: Adapting Standards: Ethical Oversight of Participant-Led Health Research. The article
raises questions (in my mind) about the ethics related to human genome sequencing projects. We ask, what is “informed consent” when you have your genome sequence published? What about your children’s interests, your siblings’, your descendants’ and any other genetically-related family or others?

Summary Points (from the article)

– Online social media and digital technologies have facilitated formation of communities of individuals engaged in establishing and conducting health research projects. The results of such participant-led research (PLR) have already appeared in leading biomedical journals.
– These projects involve research with human participants. Hence, what are the requirements for ethical oversight? To what extent is standard ethics review also suitable for PLR?
– A comparison of PLR with standard research reveals six areas that are of potential relevance to ethical oversight: institutionalization, state recognition and support, incentive structures, openness, bottom-up approach, and self-experimentation.
– The distinctive nature of PLR requires adaptation of ethical oversight standards to the character of such research. These should strike a balance between protecting interests of research participants and achieving promised benefits of PLR.
– The appropriate form of ethical oversight for PLR projects depends on which of three categories they fall into. If they meet the “institution-plus” criterion, standard ethics review applies. If not, then the appropriate form of oversight depends on the application of a minimal risk criterion.

Could these questions have any relevance to the genetic information about the microbes in your house, bedroom, pillow case, water, or kitchen counter? What if one of “your microbes” affects (infects?) someone visiting your home or office?



Hal Levin

Hal Levin is a research architect and leads the Building Ecology Research Group in Santa Cruz, CA.

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