Twisted Helix: Can Public-Private Partnerships in Large-Scale Genomic Projects Be Fair and Equitable?
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Biotechnological innovation almost always entails all three strands of the triple helix: academia, government, and industry. This is increasingly true for large scale genomics and biomedical research projects such as the Human Pangenome Reference Consortium, and the Earth BioGenome, Human Cell Atlas, and BRAINshare projects, which include commercial uses of data and samples. Five decades after biotechnology became a Big Thing in Silicon Valley, both Cambridges, and elsewhere, concerns about pricing and access to health goods and services breed skepticism that the innovation ecosystem is fair and equitable. We will discuss several concrete cases in which public-private partnerships have raised ethical issues and address whether and how ELSI scholars might be useful in making the system more transparent, fair, and trustworthy.
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