Project 1:
History of Seminal Genomic Technologies and of Genetic Tests
Principal Investigator: Bob Cook-Deegan
The focus of this research project is to understand how intellectual property (IP) rules and sharing norms have played a role in the development and dissemination of seminal genomic technologies, and how IP rules affect patient access to genetic testing. Elements of the project include case histories of a number of seminal technologies and genetic tests that study open sharing norms of science, patenting and licensing practices, and the impact of IP or its absence on subsequent development. These case histories are being used as empirical data for the other projects in our Center, as well as offering data useful to policy makers and other researchers.
Historical case studies help us understand the stories behind technological development. For each case, we ferret out information about the source of funding for crucial R&D, the role of patents and licensing, and (where relevant) business plans and strategies that influenced the emergence or failure of technologies. The end goal of each case study is to draw policy-relevant lessons by identifying crucial events influenced by specific decisions. We have developed case studies of two main types: of seminal genomic technologies and of clinical genetic testing.
The historical approach complements the legal scholarship, economics, and more statistical and aggregate methods in other cores and projects of the Center for Public Genomics. The individual case studies provide highly granular detail. The main advantage of the historical approach is being able to understand crucial events, including how and why specific decisions were made by key players. The main disadvantage of the approach is a limited ability to generalize from any one case study to policy in general. In aggregate, however, the case studies illustrate how different factors prove important or not in different situations.