Center for Public Genomics

Publications

2009-Present

Key Publications

Agarwal A, Sayres LC, Cho MK, Cook-Deegan R, Chandrasekharan S. Commercial landscape of noninvasive prenatal testing in the United States. Prenatal Diagnosis. 2013; 33: 521-531. Published online 17 May 2013. PMC3898859.

Angrist M. Eyes wide open: The Personal Genome Project, citizen science and veracity in informed consent. Personalized Medicine. 2009 6(6): 691-9. PMC3275804

Angrist M. Here is a Human Being: At the Dawn of Personal Genomics. New York: Harper Books (HarperCollins), 2010.

Angrist M. Only connect: Personal genomics and the future of American medicine. Molecular Diagnosis and Therapy. 201014(2): 67-72. PMC2901858.

Angrist M. Urge overkill: Protecting de-identified human subjects, but under what regime and at what price?American Journal of Bioethics. 2010 10(9): 17-18.

Angrist M. We are the genes we’ve been waiting for: Rational responses to the gathering storm of personal genomics. Am J Bioeth. 2009 9(6-7): 30-31. PMC3749831.

Angrist M. You never call, you never write: Why return of “omic” results to research participants is both a good idea and a moral imperative. Personalized Medicine. 2011 8(6): 651-7.  PMC3243914

Angrist M, Chandrasekharan S, Heaney C, Cook-Deegan R.Impact of gene patents and licensing practices on access to genetic testing for long QT syndrome. Peer-reviewed case study commissioned by the Secretary‘s Advisory Committee on Genetics, Health, and Society (SACGHS). Republished in Genetics in Medicine. 2010 April Supplement 12(4): S111-S154. PMC3021512.

Baldwin AL, Cook-Deegan R. Constructing narratives of heroism and villainy: a case study of Myriad’s BRACAnalysis® with Genentech’s Herceptin®.  Genome Medicine, 2013. 5 (1): 8. PMC3707051.

Ball MP, Thakuria JV, Zaranek AW, Bobe J, Bhak J, Cano C, Clegg T, Chou MF, Chung WK, Douglas SM, Gore A, HulickP, Labarga A,Lunshof J, Kim BC, Li Z, Nilsen GB, Peshkin L, Robasky K, Rosenbaum AM, Vandewege W,Vorhaus D, Yang JL, Yang L, Wu X, Aach J, Ashley EA, Drmanac R, Li JB, Angrist M, Seidman CE, Zhang K,Rehm HL, Church GM. A Public Resource Facilitating Clinical Use of Genomes. Proceedings of the National Academy of Sciences. 24 Jul 2012 109 (30):11920-7. doi: 10.1073/pnas.1201904109. PMC3409785

Beskow LM. “Informed Consent” in Genomic and Personalized Medicine (2nd Edition), HF Willard and GS Ginsburg, Eds., (New York: Academic Press, 2012), pp. 405-413 Elsevier, Inc., 2012. http://dx.doi.org/10.1016/B978-0-12-382227-7.00035-5.

Beskow LM, Burke W. Ethical issues in genetic epidemiology and population genetics. In: Coughlin SS, Beauchamp TL, Weed DL. Ethics and Epidemiology, 2nd ed.  New York: Oxford University Press, 2009.

Beskow LM, Burke W, Fullerton SM, Sharp RR. Offering aggregate results to participants in genomic research: opportunities and challenges. Genetics in Medicine. 2012 Apr;14(4):490-6. doi: 10.1038/gim.2011.62. PMC3612423

Carbone J, Gold ER, Sampat B, Chandrasekharan S, Knowles L, Angrist M, and Cook-Deegan R. DNA patents and diagnostics: not a pretty picture. Nature Biotechnology.   2010 28(8): 784-791.  PMC3026778.

Caulfield T, Chandrasekharan S, Joly Y, Cook-Deegan R. Harm, hype and evidence: ELSI research and policy guidance. Genome Medicine. 2013. 5(21). PMC3707044.

Chandrasekharan S, Cook-Deegan R. Gene patents and personalized medicine – what lies ahead? Genome Medicine. 2009 1: 92.  PMC2768999.

Chandrasekharan S, Fiffer M. Impact of gene patents and licensing practices on access to genetic testing for hearing loss. Peer-reviewed case study commissioned by the SACGHS. Republished in Genetics in Medicine. 2010 April Supplement 12(4): S155-S170. PMC3125070.

Chandrasekharan S, Heaney C, James T, Conover C, Cook-Deegan R. Impact of gene patents and licensing practices on access to genetic testing for cystic fibrosis. Peer-reviewed case study commissioned by the SACGHS. Republished in Genetics in Medicine 2010 April Supplement 12(4): S194-S211. PMC2914455.

Chandrasekharan S, Kumar S, Valley CM, Rai A. Proprietary science, open science and the role of patent disclosure: the case of zinc-finger proteins. Nature Biotechnology. 2009 27(2): 140–44.  PMC2733216

Chandrasekharan S, Pitlick E, Heaney C, Cook-Deegan R. Impact of gene patents and licensing practices on access to genetic testing for hereditary hemochromatosis.Peer-reviewed case study commissioned by the SACGHS. Republished in Genetics in Medicine. 2010 April Supplement 12(4): S156-S171. PMC3131230. 

Cohen WM and Walsh JP. Access—or not—in Academic Biomedical Research.  In, R. Dreyfus, H. First and D. Zimmerman, Eds., Working within the Boundaries of Intellectual PropertyOxford: Oxford University Press, 2010. Pp. 3-28.

Colaianni CA, Cook-Deegan R. Columbia University's Axel patents: technology transfer and implications for the Bayh-Dole Act. Milbank Quarterly. 2009 87(3): 683–715. PMC2750841

Colaianni CA, Chandrasekharan S, Cook-Deegan R.  Impact of gene patents and licensing practices on access to genetic testing and carrier screening for Tay-Sachs and Canavan disease. Peer-reviewed case study commissioned by the SACGHS. Republished in Genetics in Medicine. 2010 April Supplement 12(4): S5-S14. PMC3042321.

Cook-Deegan R. Are Human Genes Patentable? Ideas and Opinions. Annals of Internal Medicine. 11 June 2013. PMC3773305.

Cook-Deegan R. “Chapter 42.  Genomics and Patents: A Practical Guide for Genome Scientists and Clinical Researchers,” in Genomic and Personalized Medicine (2nd Edition), HF Willard and GS Ginsburg, Eds.,(New York: Academic Press, 2012), pp. 464-473 doi: http://dx.doi.org/10.1016/B978-0-12-382227-7.00042-2

Cook-Deegan, R.  Filing Will Ignite Complex Litigation Costing Millions, with Uncertain Rewards.  The Cancer Letter.  2012 38(10): 1-6.

Cook-Deegan R. Gene Patents: The Shadow of Uncertainty. Science. 2011 331 (18 Feb): 873-74. 

Cook-Deegan R. Law and Science Collide Over Gene Patents. Science 2012 338 (9 November 2012). NIHMS486077.

Cook-Deegan R. Myriad Ruling Becomes a Textbook Case Of How Not to Manage a Patent Portfolio. The Cancer Letter. 2013 39(24): 8-9.

Cook-Deegan R. The Overstated Case, in Gene Patents Special Topics issue, GeneWatch 23 (No. 5-6; Oct-Dec): 20-21, 2010.

Cook-Deegan R.  Patenting Nature: What Ruling in Myriad Case Means for Biotechnology and DNA Diagnostics. The Cancer Letter.  2011 37(31): 7-14.

Cook-Deegan R. Ruling likely to concur with Justice Department Arguments. The Cancer Letter 2013. 39(16): 7-8.  

Cook-Deegan R, Chandrasekharan S, Angrist M. The dangers of diagnostic monopoliesNature. 2009 458(7237): 405-406. PMC2702156

Cook-Deegan R, Conley J, Evans J, Vorhaus D. The Next Controversy in Genetic Testing: Clinical Data as Trade Secrets?The European Journal of Human Genetics, 14 November 2012. PMC3658186.

Cook-Deegan R, DeRienzo C, Carbone J, Chandrasekharan S, Heaney C, Conover C.  Impact of gene patents and licensing practices on access to genetic testing for inherited susceptibility to cancer: comparing breast and ovarian cancers to colon cancers. Peer-reviewed case study commissioned by the SACGHS. Republished in Genetics in Medicine. 2010 April Supplement 12(4): S15-S38. PMC3047448.

Cook-Deegan R, Heaney C.  Gene patents and licensing: case studies prepared for the Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS). Republished in Genetics in Medicine. 2010 April Supplement 12(4): S1-S2. PMC2917582.

Cook-Deegan R, Heaney C.  Patents in Genomics and Human Genetics. Annual Review of Genomics and Human Genetics.  2010 11(17): 1-43.  PMC2935940.

Cook-Deegan R, Rai AK. DNA sequence patents are not in the grave yet. Letter to the editor. Nature Biotechnology. 200927(2): 122.

Conley J, Vorhaus D, and Cook-Deegan R. How Will Myriad Respond to the Next Generation of BRCA Testing? Genomics Law Report, 1 March 2011.

Cox N, Heaney C, Cook-Deegan R. The context for secrecy and conflicts between commercial and scientific roles in academic health research.  In: Trust and Integrity in Biomedical Research: The Case of Financial Conflicts of Interest. Thomas H. Murray and Josephine Johnston, Eds.  Baltimore: Johns Hopkins UP, 2010.

Easter, MM. “Not all my fault: Genetics, stigma, and personal responsibility for women with eating disorders.Social Science and Medicine. 75(8): 1408-1416. October 2012. PMC3495131.

Evans J.  Putting patients before patents. Genetics in Medicine.  2010 April Supplement 12(4): S3-S4.

Gold ER, Carbone J. Myriad Genetics: In the eye of the policy storm. Genetics in Medicine. 2010 April Supplement 12(4): S39-S70. PMC3021512.

Gold ER, Cook-Deegan R, Bubela T. AMP v. Myriad: A Surgical Strike on Blockbuster Business Models. Science Translational Medicine. 2013 Jul 3; 5(192): 9. doi: 10.1126/scitranslmed.3006849

Heaney C, Carbone J, Gold ER, Bubela T, Holman CM, Colaianni A, Lewis T, Cook-Deegan R. The perils of taking property too far. Stanford Journal of Law, Science, and Policy. 2009 1: 46-64. PMC2902196.

Kepler T, Crossman C, Cook-Deegan R. Metastasizing patent claims on BRCA1. Genomics. 2010 95(5): 312-4. PMC2857658.

Kesselheim AS, Cook-Deegan R, Winickoff DE, Mello MM. Gene Patenting – The Supreme Court Finally Speaks. The New England Journal of Medicine. Published online 2013 July 10. doi: 10.1056/NEJMhle1308199. PMC3777541.

Kumar S. The other patent agency: Congressional regulation of the ITC. Florida Law Review. 2009 61(3): 529-580.  PMC2911038.

Litan RE and Cook-Deegan R.  “Universities and Economic Growth: The Importance of Academic Entrepreneurship.”  Chapter 3 (pp. 55-82) in Rules for Growth: Promoting Innovation and Growth Through Legal Reform. The Kauffman Task Force on Law, Innovation, and Growth.  Ewing Marion Kauffman Foundation: Kansas City, 2011.

Magnus D, Cho MK, Cook-Deegan R. Direct-to-consumer genetic tests: beyond medical regulation? Genome Medicine. 2009 1:17. PMC2664950.

Mathews D, Cook-Deegan R, Bubela T. Patents and misplaced angst: Lessons for translational stem cell research from genomics. Cell Stem Cell 2013. 12(5): 508-512. PMC3776312.

Minear MA, Kapustij C, Boden K, Chandrasekharan S, Cook-Deegan R. Cystic Fibrosis patents: a case study of successful licensing. Les Nouvelles: The Journal of the Licensing Executives Society International. March 2013. PMC3825408.

Mitchell R, Waldby C. National biobanks: clinical labour, risk production, and the creation of biovalue. Science, Technology, & Human Values. 2010 35(3): 330-355. PMC2879701

Padmanabhan S, Amin T, Sampat B, Cook-Deegan R, Chandrasekharan S. Intellectual property, technology transfer and manufacture of low-cost HPV vaccines in India. Nature Biotechnology. 2010 28(7): 671-678.  PMC3138722.

Powell A, Chandrasekharan S, Cook-Deegan R. Spinocerebellar ataxia: patient and health professional perspectives on whether and how patents affect access to clinical genetic testing. Peer-reviewed case study commissioned by the SACGHS.  Republished in Genetics in Medicine. 2010 April Supplement 12(4): S83-S110. PMC3138714.

Pressman, L. DNA patent licensing under two policy frameworks: implications for patient access to clinical diagnostic genomic tests and licensing practice in the not for profit sector. Bloomberg BNA: Life Sciences Law and Industry Report. 2012. [Available at: http://www.uspto.gov/aia_implementation/gene-comment-pressman.pdf]

Rai A.  Patent Validity Across the Executive Branch: Ex Ante Foundations for Policy Development. 61 Duke Law Journal 101 (2012). [Available at: http://scholarship.law.duke.edu/dlj/vol61/iss6/3]

Rai A. Critical commentary on ‘open source’ in the life sciences. In: Van Overwalle G, editor. Gene patents and collaborative licensing models: patent pools, clearinghouses, open source models and liability regimes.  Cambridge, UK: Cambridge University Press; 2009. Pp. 213-218.

Rai A.  Unstandard Standardization: The Case of BiologyCommunications of the ACM.  2010 53(1): 37-39.

Rai A, Allison J, Sampat B. University software ownership and litigation: a first examination. 87 North Carolina Law Review 1519 (2009). PMC3674765

Rai A, editor. Critical concepts in intellectual property law: biotechnology. Northampton, MA: Edward Elgar Publishing, 2011. 

Rai A, Reichman J, Uhlir P, Crossman C. Pathways across the valley of death: novel intellectual property strategies for accelerated drug discovery. Yale Journal of Health Law, Policy, and Ethics. 2008 8(1): 53-89. Reprinted in: van Overwalle G, editor. Gene patents and clearing house models - from concepts to cases. Cambridge, UK: Cambridge University Press; 2009.  Pp. 213-218.

Rai AK. Biomedical Patents at the Supreme Court: A Path Forward. 66 Stanford Law Review Online 111 (2013). NIHMS548533.

Rai AK. Improving (Software) Patent Quality Through the Administrative Process. Houston Law Review.  2013 Symposium 51(2): 503-543. NIHMS551398.

Rai AK, Cook-Deegan R. Moving Beyond ‘Isolated’ Gene Patents. Science. 12 July 2013. 341(6142): 137-138. Published online 27 June 2013. PMC3807680.

Rai AK, Samphat BN.  Accountability in Patenting of Federally Funded Research. Nature Biotechnology Vol. 30, No.10, October 2012. PMC3753070.  

Reichman JHCompulsory licensing of patented pharmaceutical inventions: evaluating the options. Journal of Law, Medicine and Ethics. 2009 37(2): 247-263. PMC2893582

Reichman JH. Rethinking the role of clinical trial data in international intellectual property law: the case for a public goods approach. Marquette Intellectual Property Law Review. 2009 13(1): 1-68. PMC2860741

Reichman JH, Okediji RL. When Copyright Law and Science Collide: Empowering Digitally Integrated Research Methods on a Global Scale. U. Minn. Law Rev., Vol. 96, No. 4, 2012. NIHMS419209. (PMC ID-In Process). [Available at: http://scholarship.law.duke.edu/faculty_scholarship/2675/]

Roach M, Cohen WM. Lens or Prism? Patent citations as a measure of knowledge flows from public research. Management Science, Feb 2013 (made available 9 Nov 2012 online on INFORMS “Articles in Advance”). PMC3901515.

Rusert BM, Royal C.  Grassroots Marketing in a Global Era: More Lessons from BiDilThe Journal of Law, Medicine, and Ethics. 2011 39(1): 79-90.  PMC3172009.

Skeehan K, Heaney C, Cook-Deegan RImpact of gene patents and licensing practices on access to genetic testing for Alzheimer’s disease. Peer-reviewed case study commissioned by the SACGHS. Republished in Genetics in Medicine. 2010 April Supplement 12(4): S71-S82. PMC2913132.

Taylor DH, Cook-Deegan R, Hiraki S, Roberts JS, Blazer DG, and Green RC.  Genetic Testing for Alzheimer’s and Long-Term Care Insurance. Health Affairs.  2010 29(1): 102-108.  PMC2931337.

Terry S and Cook-Deegan R. “Your Genome Belongs to You,” Health Affairs blog, http://healthaffairs.org/blog/2012/06/08/your-genome-belongs-to-you/ (June 8, 2012).

United Nations Conference on Trade and Development (UNCTAD). Using Intellectual Property Rights to Stimulate Pharmaceutical Production in Developing Countries: A Reference Guide. Prepared for UNCTAD by Christoph Spenneman and Jerome H. Reichman (United Nations Publications, May 2011, 221 pp.)

Wiechers IR, Perin NC, Cook-Deegan R. The emergence of commercial genomics: analysis of the rise of a biotechnology subsector during the Human Genome Project, 1990-2004. Genome Medicine, 2013 5(9):83. Published online 20 Sep 2013. PMC Journal – In Process.

 

2009-Present

Additional Publications

Angrist M.  School of hock: two universities have announced plans to collect students’ saliva and analyze their DNA.  Is that a good idea? Slate Magazine.  Posted 23 June 2010. 

Arrow KJ, Bilir K, Brownlee S, Califf RM, Cook-Deegan R, Douglas FL, P Ehrlich P, Friend SH, Gratzer D, Harrington SE,  Hyman DA, Lindsey B, Litan RE,  Love SM,  Ludy E, Mitchell L, Moulton B, Pahud D, Poste G, Prendergast FG, Priest GL, Rai AK, Rauch J, Richman BD, Schramm CJ, Schuck PH, Simon GC, Smith JM, Stangler D, Tyler JE and Wilbanks J (Ewing Marion Kauffman Foundation Task Force on Cost-Effective Health Care Innovation, Kauffman Summer Legal Institute, Dana Point, Calif, July 2011).

Valuing Health Care: Improving Productivity and Quality SSRN working paper http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2042644 posted April 20, 2012; http://dx.doi.org/10.2139/ssrn.2042644.

Bagley MA and Rai AK. The Nagoya Protocol and Synthetic Biology Research: A Look at the Potential Impacts. Woodrow Wilson International Center for Scholars. Synthetic Biology Project 6, November 2013.

Benjamin SM and Rai AK.  Structuring US Innovation Policy: Creating a White House Office of Innovation Policy.  The Information Technology & Innovation Foundation.  Washington, DC.  June 24, 2009. 

Beskow LM, Burke W, Fullerton SM, Sharp RR. Offering aggregate results to participants in genomic research: benefits and challenges. Genetics in Medicine. April 2012. 14(4):490-6. doi: 10.1038/gim.2011.62. PMC3612423

Boyle J.  “Endowed by Their Creator?: The Future of Constitutional Personhood.” Online Report. The Brookings Institution: The Future of the Constitution Series, Number 10.  March 2011.  Also in Jeffrey Rosen and Benjamin Wittes, Eds. Constitution 3.0: Freedom and Technological Change.  The Brookings Institution: The Future of the Constitution Series, Number 14.  Brookings Institution Press: Washington, D.C., 2011.

Cadigan RJ, Easter MM, Dobson AW, Davis AM, Rothschild BB, Zimmer C, Sterling R, Henderson G.  “That’s a good question”: University researchers’ views on ownership and retention of human genetic specimens.  Genetics in Medicine.  2011 13(6): 569-575. PMC3385643.

Cook-Deegan R, “Gene-Environment Studies in an Era of Full-Genome Sequencing:  Some Lessons from Eugenics and the Race-IQ Debates.” Chapter 12 (pp. 235-257) in Gene-Environment Interactions in Developmental Psychopathology: So What? KA Dodge, M Rutter, eds. New York: Guilford Press, 2011.

Cook-Deegan R.  “Estudios sobre genes-medio ambiente en la era de secuenciación del genoma completo: algunas lecciones de la eugensia y los debates sobre razas-cociente intelectual.” Perspectivas Bioéticas 2011 (Primer Semestre) 16(30): 34-61. [Adaptation and Spanish translation of article above.]

Cook-Deegan R.  Dr. Varmus Goes to Washington. Book review: The Art and Politics of Science, Harold Varmus.  American Scientist.  2009 97(2): 152-153.

Cook-Deegan R.  Boosting Health Services Research. Science 2011 333(9 Sept): 1384-1385.PMC3232017.

DuBois JM, Beskow LM, Campbell J, Dugosh K, Festinger D, Hartz S, James R, Lidz C. Restoring balance: the protection of “vulnerable” research participants. American Journal of Public Health. Dec 2012 102(12): 2220-5. 10.2105/AJPH.2012.300757. PMC3493853. Available 1 Dec 2013.

Green RC, Roberts JS, Cupples LA, Relkin NR, Whitehouse PJ, Brown T, Eckert SL, Butson M, Sadovnick AD, Quaid KA, Chen C, Cook-Deegan R, Farrer LA.  Disclosure of APOE Genotype for Risk of Alzheimer’s DiseaseThe New England Journal of Medicine.  2009 361(3): 245-254.  PMC2778270. 

Haga SB, Warner LR, O'Daniel J. The potential of a placebo/nocebo effect in pharmacogenetics.Public Health Genomics. 200912(3): 158-62. PMC2738872

Katsanis SH.  Use DNA to stop child trafficking.  Op-ed.  The Globe and Mail (Toronto, Canada).  23 Feb 2010. 

Latif A, Maskus K, Okediji R, Reichman J, Roffe P.  Overcoming the Impasse on Intellectual Property and Climate Change at the UNFCCC:  A Way Forward. International Center for Trade and Sustainable Development (ICTSD), Geneva, Switzerland, Policy Brief No. 11, November 2011, Program on Innovation Technology and Intellectual Property.

Lenoir T, Giannella E.  Technological platforms and the layers of patent data.  In: Biagioli M, Jaszi P, Woodmansee M. Making and Unmaking Intellectual Property: Creative Production in Legal and Cultural Perspective. Chicago: University of Chicago Press, 2011.  Pp. 359-384.

Lunshof JE, Bobe J, Aach J, Angrist M, Thakuria JV, Vorhaus DB, Hoehe MR, Church GM. Personal Genomes in Progress: From the Human Genome Project to the Personal Genome Project. Dialogues Clin Neurosci. 2010 12(1):47-60. PMC3181947.

Lyerly AD, Steinhauser K, Voils C, NameyE, Alexander C, Bankowski B, Cook-Deegan R, Dodson WC, Gates E, Jungheim ES, McGovern PG, Myers ER, Osborn B, Schlaff W, Sugarman J, Tulsky JA, Walmer D, Faden RR, Wallach E.  Fertility patients’ views about frozen embryo disposition: results of a multi-institutional U.S. surveyFertility and Sterility.  2010 93(2): 499-509.  PMC2828821

McGuire AL, Beskow LM.  Informed consent in genomics and genetic research. Annual Review of Genomics and Human Genetics.  2010 11(Sept 2010): 361-381.  PMC3216676

Mitchell R.Media life: bioart and the vitality of media.  Seattle: University of Washington Press, 2010.

Ortí L, Carbajo RJ, Pieper U, Eswar N, Maurer SM, Rai, AK, Taylor G, Todd MH, Pineda-Lucena A, Sali A, Marti-Renom MA.  A kernel for open source drug discovery in tropical diseases. PLoS Neglected Tropical Diseases. 20093(4): e418. PMC2667270.

Rai AK. Diagnostic Patents at the Supreme Court. Nies Lecture. Marquette Lawyer 2013: 30-34.

Rai AK.  Growing Pains in the Administrative State: The Patent Office’s Troubled Quest for Managerial Control. The University of Pennsylvania Law Review.  2009 157(6): 2051-2081.

Rai, A.  Who’s Afraid of the Federal Circuit? Yale Law Journal Online 121(335), 20 Dec 2011. 

Reichman JH. How trade secrecy law generates a natural semicommons of innovative know-how. In: Dreyfuss R, Stranberg KJ, editors. The law and theory of trade secrecy: a handbook of contemporary research. Elgar Press, 2011. 

Reichman JH.  Intellectual property in the twenty-first century: will the developing countries lead or follow? Houston Law Review. 2009 Symposium 46(4): 1115-1185. PMC3060777.

Reichman JH, Dinwoodie GB, Samuelson P. A reverse notice and takedown regime to enable public interest uses of technically protected copyrighted works. Berkeley Technology Law Journal. 2007 22(3): 981–1060. Reprinted in: Strowel A, editor. Peer-to-peer file sharing and secondary liability in copyright law. Edward Elgar Publishing; 2009. Pp. 229-304.

Wald P.  We have never been biological.  Forum: “Conference Debates.” PMLA [Publications of the Modern Language Association]. 2009 124(3): 953-55.

Wald P. The intimacies of strangers. Dossier: Viral Fears, e-misférica 6.1. 2009 (special issue).

 

Forthcoming Publications

Easter M. Interpreting genetics in the context of eating disorders: Evidence of disease, not diversity. Sociology of Health and Illness. 36(6), forthcoming July 2014. NIHMS530562.

Reichman JH, Deuderwaerdere T, Uhlir PF. Global Intellectual Property Strategies for the Microbial Research Commons: Governing Digitally Integrated Genetic Resources, Data and Literature. Cambridge University Press, forthcoming 2014. (300 pp.)

Van Zimmeren E, Nicol D, Gold ER, Carbone J, Chandrasekharan S, Baldwin AL, Cook-Deegan R. “The BRCA Patent Controversies: An International Review of Patent Disputes,” Chapter 9 in Breast Cancer Gene Research and Medical Practices: Transnational Perspectives in the Time of BRCA. Gibbon S, Joseph G, Mozersky J, zur Nieden A, Palfner S, Eds. Routledge, forthcoming March 2014.

 

2004-2008

Key Publications

Angrist M. Personal genomics: access denied?  Technology Review. Sept./Oct 2008.

Angrist M, Cook-Deegan R. Who owns the genome?  The New Atlantis. Winter 200611: 87-96. (CPG 1.0 “Case Histories”)

Benjamin SM, Rai, A. Who’s afraid of the APA: what the patent system can learn from administrative law.  Georgetown Law Journal.2007 95: 296 – 336. (CPG 1.0 “Open Source Studies”)

Benjamin S, Rai A. Fixing innovation policy: a structural perspective. George Washington Law Review. November 2008 (accepted March 2008) 77(1):1-88. (CPG 1.0 “Open Source Studies”).

Beskow LM, Dame L, Costello EJ. Certificates of confidentiality and compelled disclosure of data. Science. 2008 322(5904):1054–1055. PMC2694567. (Core 2)

Boyle J. The Public Domain: Enclosing the Commons of the Mind. New Haven, CT: Yale University Press, 2008. (CPG 1.0 “Open Source Studies”)

Boyle J. Mertonianism unbound? Imagining free, decentralized access to most cultural and scientific material. In Understanding Knowledge as a Commons: From Theory to Practice, Eds. Elinor Ostrom, Charlotte Hess. Cambridge, MA: MIT Press, 2007. 123 – 144. (CPG 1.0 “Open Source Studies”)

Caulfield T, Cook-Deegan RM, Kieff FS, Walsh J. Evidence and anecdotes: analysis of human gene patenting controversies. Nature Biotechnology.2006 24: 1091-4. PMC2701726 (CPG 1.0 “Case Histories”)

Chandrasekharan S, Perin NC, Wiechers IR, and Cook-Deegan R. Public-private interactions in genomic medicine: research and development. In Genomic and Personalized Medicine, eds. Huntington F. Willard, Geoffrey S. Ginsburg. NY: Elsevier, 2008. Pp. 434-444. (CPG 1.0 “Case Histories”)

Cohen WM, Walsh JP. Real impediments to academic biomedical research.  Innovation Policy and the Economy. 2008 8(1): 1 – 30. (Accepted before April 7, 2008.)

Cook-Deegan R. Gene patents. In From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book, ed. Mary Crowley. Garrison, NY: The Hastings Center, 2008. Pp. 69 – 72. (CPG 1.0 “Case Histories”)

Cook-Deegan R. The science commons in health research: structure function and value. Journal of Technology Transfer.  2007 32(3):133-156. (CPG 1.0 “Case Histories”)

Cook-Deegan R, Dedeurwaerdere T. The science commons in life science research: structure, function, and value of access to genetic diversity. International Social Science Journal (UNESCO). June 200658(188): 299-318. Translated as <<Biens communs scientifiques>> et recherché en sciences de la view: structure, function et valeur de l’acces a la diversite genetique. Revue international des sciences socials. 2006 188:317 – 338. 

Eisenberg R, Rai A. Harnessing and sharing the benefits of state-sponsored research: intellectual property rights and data sharing in California's stem cell initiative. Berkeley Technology Law Journal. 200621(3): 1187–1213. (CPG 1.0 “Open Source Studies”)

Feldman M, Colaianni A, Liu K.  Commercializing Cohen-Boyer 1980-1997. 2005. DRUID Working Paper 05-21, Copenhagen Business School. 

Feldman M, Colaianni A, Liu K. Lessons from the commercialization of the Cohen-Boyer patents: the Stanford University licensing program. In Intellectual Property Management in Health and Agricultural Innovation: A Handbook of Best Practices, eds. A. Krattiger, R.T. Mahoney, L. Nelsen, et al. PIPRA: Davis, U.S.A., 2007. 1797-1808. (CPG 1.0 “Case Histories”)

Fore J, Wiechers IR, Cook-Deegan R. The effects of business practices, licensing, and intellectual property on development and dissemination of the polymerase chain reaction: case study. J Biomed Discov Collab. 2006 1: 7. PMC1523369. (CPG 1.0 “Case Histories”)

Ginsburg GS, Haga SB. Translating genomic biomarkers into clinically useful diagnostics. Expert Review of Molecular Diagnostics. 2006 6: 179-91. (Core 2)

Haga SB.  From sequence to genomic medicine: genome policy considerations.  In: Willard HF, Ginsburg GS, editors.  Genomic and personalized medicine.  NY: Elsevier, 2008.  Pp. 388-400.  (Core 2)

Haga SB. Teaching resources for genetics. Nat. Rev. Genet.2006 7: 223-9. (Core 2)

Haga S, Beskow LM. Ethical, legal, and social implications of biobanks for genetics research. In Genetic Dissection of Complex Traits, Second Edition, ed. DC Rao. San Diego, CA: Academic Press, 2008. Pp. 505 – 544. (Core 2)

Haga SB, Beskow L. Ethical, legal, and social implications of biobanks for genetics research. Advances in Genetics. 2008 60: 505-44.(Core 2)

Haga SB, Burke W.  Pharmacogenetic testing:  not as simple as it seems. Genetics in Medicine. 2008 10(6):391 – 395. (Core 2)

Haga SB, Ginsburg GS. Prescribing BiDil: is it black and white? J Am. Coll. Cardiol. 2006 48(1): 12-4. (Core 2)

Haga SB, Willard HF. Defining the spectrum of genome policy. Nat. Rev. Genet.20067(12): 966-72. (Core 2)

Kepler T, Marti-Renom M, Maurer S, Rai A, Taylor G, Todd M. Open source research: the power of us. Australian Journal of Chemistry. 2006 59: 291-294. (CPG 1.0 “Open Source Studies”)

Kumar S, Rai A. Synthetic biology: the intellectual property puzzle. Texas Law Review. 2007 85: 1745–1768. (CPG 1.0 “Open Source Studies”)

Lenoir T, Giannella E. The emergence and diffusion of DNA microarray technology. J. Biomed. Discov. Collab. 2006 1: 11.PMC1590052. (CPG 1.0 “Case Histories”)

Mitchell R. Sacrifice, individuation, and the economies of genomics. Literature and Medicine. 200726(1): 126-158. (CPG 1.0 “Case Histories”)

Mitchell R, Burgess H, Thurtle P. Biofutures: Owning Body Parts and Information (DVD-ROM). University of Pennsylvania Press, April 2008. (CPG 1.0 “Case Histories”)

Pohlhaus JR, Cook-Deegan RM. Genomics research: world survey of public funding. BMC Genomics. 2008 9:472. PMC2576262. (CPG 1.0 “Case Histories”)

Pressman L, Burgess R, Cook-Deegan R, McCormack SJ, Nami-Wolk I, Soucy M, Walters L. The licensing of DNA patents by US academic institutions: an empirical survey. NatureBiotechnology. 200624(1): 31–39. PMC2726797(Core 3)

Rai A. Open and collaborative research: a new model for biomedicine. In Intellectual Property Rights in Frontier Industries: Software and Biotechnology, Ed. Robert Hahn. Washington, DC: AEI-Brookings Press, 2005. Pp. 131 – 158. (CPG 1.0 “Open Source Studies”)

Rai A. 'Open and collaborative' biomedical research: theory and evidence. In Advancing Knowledge and the Knowledge Economy, Eds. Brian Kahin, Dominique Foray. Cambridge, MA: MIT Press, 2006. Pp. 391 – 414. (CPG 1.0 “Open Source Studies”)

Rai A. Building a better innovation system: combining facially neutral patent standards with regulations of end product therapeutics. Houston Law Review. 2008 45:1037–1057. PMC2874910.(CPG 1.0 “Open Source Studies”)

Rai A, Allison J, Sampat B, Crossman C. University software ownership: technology transfer or business as usual? Duke Law School Legal Studies Paper No. 160. July 2007. (CPG 1.0 “Open Source Studies”)

Rai A, Boyle J. Synthetic biology: caught between property rights, the public domain, and the commons.2007PLoS Biology 5(3): e58. PMC1821064. (CPG 1.0 “Open Source Studies”)

Reichman JH, Uhlir PF, Ritch HJ. Access to scientific and technological knowledge: UNESCO’s past, present and future roles. In Standard Setting in UNESCO, vol. 1, Normative Action in Education, Science and Culture, Ed. A.A. Yusuf. Paris: UNESCO, 2007. Leiden, Netherlands: Martinus Nijhoff, 2007. (English & French.) 323-350. Catalog information available here (CPG 1.0 “Liability Rules”)

Staples J, Cook-Deegan R, Ginsburg GS. The role of the academic medical center in advancing personalized health care. In Personalized Health Care: Pioneers, Partnerships, Progress. Report prepared by the Initiative on Personalized Health Care, Department of Health and Human Services. Nov. 2008. (CPG 1.0 “Case Histories”)

So A, Rai A, Cook-Deegan R. Intellectual property rights and technology transfer: enabling access for developing countries. Commissioned Report for the World Health Organization, Commission on Intellectual Property Rights, Innovation, and Public Health. Submitted April 4, 2005 to the World Health Organization. (CPG 1.0 “Open Source Studies”)

So A, Sampat B, Rai A, Cook-Deegan R, Reichman J, Weissman R, Kapczynski A. Is Bayh-Dole good for developing countries? Lessons from the US experience. PLoS Biology.6(10): e262.PMC2573936.(CPG 1.0 “Open Source Studies”)

Tofano D, Wiechers IR, Cook-Deegan R. Edwin Southern, DNA blotting, and microarray technology: a case study of the shifting role of patents in academic molecular biology. 2006 Genomics, Society and Policy. 2(2): 50-61. (CPG 1.0 “Case Histories”)

Wald P. Genomics: the spaces and races of citizenship in the genome age. In America -- From Near and Far: Varieties of American Experience, Eds. Marc Lee Raphael, Cornelia Wilhelm. Williamsburg, VA: Department of Religious Studies, College of William and Mary. 2007. (CPG 1.0 “Case Histories”)

Wald P. Blood and stories: how genomics is rewriting race, medicine and human history. Patterns of Prejudice: Race and Contemporary Medicine (special issue, ed. Sander Gilman). 2006 40(4-5): 303–333. Republished as Blood and stories: how genomics is rewriting race, medicine and human history. In: Race in Contemporary Medicine, ed. Sander L. Gilman. NY: Routledge, 2008.  Pp. 1 – 31. (CPG 1.0 “Case Histories”)

Wald P. Editor’s preface to genomics in literature, the visual arts, and culture. Literature and Medicine (Special issue, Eds. Priscilla Wald, Jay Clayton, Karla F. C. Holloway). Spring 2007 26(1): vi–xvi. (CPG 1.0 “Case Histories”)

Wald P. What's in a cell?: John Moore's spleen and the language of bioslavery. New Literary History: Essays Probing the Boundaries of the Human in Science and Science Fiction (special issue). Spring 2005 36(2):205-25. (CPG 1.0 “Case Histories”)

Waldby C, Mitchell R. Tissue Economies: Blood, Organs and Cell Lines in Late Capitalism. Durham: Duke University Press, 2006. (CPG 1.0 “Case Histories”)

Walsh JP, Cho C, Cohen WM. View from the bench: patents, research and material transfers. Science.2005 309:2002-2003. (CPG 1.0 “Case Histories”)

Walsh JP, Cohen WM, Cho C. Where excludability matters: material versus intellectual property in academic biomedical research. Research Policy.2007 36(8): 1184-1203.(CPG 1.0 “Case Histories”)

 

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Page last updated by Jae Cheon on 28 January 2014 for the Duke University Center for Public Genomics, funded by the U.S. National Human Genome Research Institute (P50 HG 003391).