Document Type
Article
Publication Date
January 2012
Abstract
The opportunity to use extensive genetic data, personal information, and family medical history for research purposes may be naturally appealing to the personal genetic testing (PGT) industry, which is already coupling its direct-to-consumer (DTC) products with social networking technologies, as well as to potential industry or institutional partners. This article evaluates the transformation in research that the hybrid of PGT and social networking will bring about, and – highlighting the challenges associated with a new paradigm of “patient-driven” genomic research – focuses on the consequences of shifting the structure, locus, timing, and scope of research through genetic crowd-sourcing. This article also explores potential ethical, legal, and regulatory issues that arise from the hybrid between personal genomic research and online social networking, particularly regarding informed consent, institutional review board (IRB) oversight, and ownership/intellectual property (IP) considerations.
Recommended Citation
Valerie Gutmann Koch,
PGTandMe: Social Networking-Based Genetic Testing and the Evolving Research Model,
22
Health Matrix
33
(2012).
Available at:
https://scholarship.kentlaw.iit.edu/fac_schol/319