This work builds directly on prior empirical research conducted by the PI and his collaborators.[135] Our survey conducted for the National Research Council suggested that patents were not major impediments to the flow of either knowledge or materials among research scientists. Rather, the main determinants of withholding behavior appeared to be scientific competition, prior business-related experience (interpreted as signaling respondent interest in commercial goals), and simply the cost and effort of producing and sharing the requested materials. Moreover, what was subject to friction was not so much intellectual property as the materials used in research-thus, tangible, as distinct from intellectual property. (But of note, our survey also found one reason patents do not appear to impede research greatly is that researchers do not check for IP rights. This could change if the law were to be aggressively enforced. There are good reasons patent rights are usually not asserted against research uses, but practices are subject to change, a topic addressed in Project 2.) Our prior empirical findings suggested that an economic model could be fruitfully applied to understanding the drivers of the voluntary flows of research inputs-data, findings, materials-among researchers, and the consequent research efficiencies realizable from such flows.[136] For example, the empirical finding that IP currently has little effect on the flow of knowledge among academic scientists is consistent with the fact that accessing patent-protected knowledge by academics without permission of the owner is rarely costly since it is often disclosed in the scientific literature, and the expected penalties for infringement of another academic's patent are slight, at most, assuming the owner is even aware of the infringement to begin with.[137] (Situations in which data in scientific publications and in patents are not sufficient to circumvent patents, which our model would also have to accommodate, will be a subject of Research Theme 1.) An economic calculus is also consistent with the greater prominence of friction in the exchange of materials because the provision of materials often requires effort and entails costs. Moreover, it is quite simple and inexpensive to withhold materials from the perspective of the scientist who is asked to provide them. Finally, the apparent role of greater scientific competition in increasing the likelihood of withholding is also consistent with an economic calculus applied to the voluntary provision of materials since more intense scientific competition should increase the expected benefit of withholding.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Specialized Center (P50)
Project #
5P50HG003391-09
Application #
8661779
Study Section
Special Emphasis Panel (ZHG1)
Project Start
Project End
Budget Start
2014-04-01
Budget End
2015-03-31
Support Year
9
Fiscal Year
2014
Total Cost
Indirect Cost
Name
Duke University
Department
Type
DUNS #
City
Durham
State
NC
Country
United States
Zip Code
27705
Cook-Deegan, Robert; Ankeny, Rachel A; Maxson Jones, Kathryn (2017) Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance. Annu Rev Genomics Hum Genet 18:389-415
Cook-Deegan, Robert; McGuire, Amy L (2017) Moving beyond Bermuda: sharing data to build a medical information commons. Genome Res 27:897-901
Thorogood, Adrian; Cook-Deegan, Robert; Knoppers, Bartha Maria (2017) Public variant databases: liability? Genet Med 19:838-841
Cook-Deegan, Robert; Vishnubhakat, Saurabh; Bubela, Tania (2016) The mouse that trolled (again). J Law Biosci 3:185-191
Michie, Marsha; Kraft, Stephanie A; Minear, Mollie A et al. (2016) Informed decision-making about prenatal cfDNA screening: An assessment of written materials. Ethics Med Public Health 2:362-371
Meredith, Stephanie; Kaposy, Christopher; Miller, Victoria J et al. (2016) Impact of the increased adoption of prenatal cfDNA screening on non-profit patient advocacy organizations in the United States. Prenat Diagn 36:714-9
Minear, Mollie A; Lewis, Celine; Pradhan, Subarna et al. (2015) Global perspectives on clinical adoption of NIPT. Prenat Diagn 35:959-67
Angrist, Misha (2015) Start me up: ways to encourage sharing of genomic information with research participants. Nat Rev Genet 16:435-6
Burke, Wylie; Appelbaum, Paul; Dame, Lauren et al. (2015) The translational potential of research on the ethical, legal, and social implications of genomics. Genet Med 17:12-20
Minear, Mollie A; Alessi, Stephanie; Allyse, Megan et al. (2015) Noninvasive Prenatal Genetic Testing: Current and Emerging Ethical, Legal, and Social Issues. Annu Rev Genomics Hum Genet 16:369-98

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