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Exponential declines in the cost of human genome sequencing is starting to put applications in the hands of researchers and consumers that were only dreamt of previously. Individuals are starting to have access to their own genomic data which can be actionable in a variety of ways including drug response, health condition analysis, athletic capability, and ancestry. DIYgenomics is a new platform bringing citizen scientists together to run peer cohort research studies and conduct novel research linking genetic data and physical biomarkers. Some norms are developing in response to the variety of community-based research issues that arise such as adaptive studies, informed consent, security, anonymity, and study design.
Melanie Swan is a genomics researcher, hedge fund manager, and leader in the Health 2.0 movement. Recent publications include “Multigenic Condition Risk Assessment in Direct-to-Consumer Genomic Services,” “Engineering Life into Technology,” and “Emerging Patient-Driven Health Care Models.” She serves as an advisor to research foundations, government agencies, corporations, and startups. Melanie has an MBA from the Wharton School of the University of Pennsylvania and a BA from Georgetown University. She is an advisor and faculty member at Singularity University.