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The Perils of Taking Property Too Far

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The Perils of Taking Property Too Far The Perils of Taking Property Too Far Christopher Heaney,* Julia Carbone,** Richard Gold,*** Tania Bubela,**** Christopher M. Holman,***** Alessandra Colaianni,****** Tracy Lewis,******* Robert Cook-Deegan* I. INTRODUCTION.................................................................................................................... 46 II. GENETIC DIAGNOSTIC TESTING & CANAVAN DISEASE .......................................... 49 III. GENETIC DIAGNOSTIC TESTING FOR INHERITED BREAST AND OVARIAN CANCER (“BRCA”) ............................................................................................................... 51 IV GOING PUBLIC: MEDIA ACCOUNTS OF MYRIAD GENETICS................................... 55 V. LESSONS FROM THE UNIVERSITY ................................................................................. 57 VI. BIOBANKS’ OBLIGATIONS.............................................................................................. 58 VII. INVOLVING AFFECTED CONSTITUENCIES IN DECISION-MAKING..................... 60 VIII. PARTICIPATION IN THE GENOMIC AGE.................................................................... 62 IX. CONCLUSION...................................................................................................................... 64 I. INTRODUCTION Many policies governing biobanks revolve around ownership and control of the materials and information in them. Those who manage biobanks may be tempted to seek the broadest legal rights possible over material and data. However, we suggest that even if ownership and control were clearly defined by the law and readily obtained by biobanks, how legal rights are used in practice matters as much or more than the rules for ownership. We draw lessons from cases in genetic testing where the use or assertion of legal rights led to preventable controversy and suboptimal outcomes. In the cases we describe, the attempt to acquire and exercise intellectual property rights antagonized and alienated stakeholders, who we define broadly to include the donors, patients, doctors, research institutions, health care providers, governments, * Duke Institute for Genome Sciences & Policy ** Duke University School of Law; McGill University Centre for Intellectual Property Policy *** Centre for Intellectual Property Policy; McGill Faculty of Law **** Department of Public Health Sciences, School of Public Health, University of Alberta ***** University of Missouri-Kansas City ****** The Advisory Board Co.; Duke Institute for Genome Sciences and Policy ******* Fuqua School of Business, Duke University * Duke Institute for Genome Sciences & Policy. The authors thank Timothy Caulfield (Faculty of Law & School of Public Health, Health Law Institute, University of Alberta), Subhashini Chandrasekharan (Duke Institute for Genome Sciences and Policy), and Lauren Dame (Duke Institute for Genome Sciences and Policy; Duke University School of Law) for reviewing all or portions of previous drafts and directing the authors toward references. CH, RCD, SC, and LD gratefully acknowledge the support of the National Human Genome Research Institute and the Department of Energy (CEER Grant P50 HG003391, Duke University, Center of Excellence for ELSI Research). RG gratefully acknowledges the support of the Social Sciences and Humanities Research Council. 2009 THE PERILS OF TAKING PROPERTY TOO FAR 47 and citizens with an interest in research and its outcomes.1 By analogy, even if biobanks could acquire expansive and clear property rights over materials and data, biobanks that want to maintain productive relationships with stakeholders must not lose the trust of those who contribute material or others with an interest in research. Our analogy to genetic testing is instructive for biobanks, which we define here as institutions that maintain collections of genetic material for use in research.2 Biobanks include tissue collections managed by academic institutions,3 government agencies,4 and private, nonprofit institutions5 as well as private, commercial entities.6 Some biobanks are organized as private-public partnerships.7 The lessons emerging from clinical testing of patented genes may be even more relevant for biobanks with commercial interests than for academic and nonprofit biobanks precisely because of the salience and complexity of public-private interactions.8 However, biobanks require a source for materials and data. People’s willingness to provide those materials and data depends in part on individuals’ and the public’s trust in biobanks. To build and maintain trust, researchers and research institutions must take stakeholders’ concerns into account when making important decisions.9 Biobanks would do well to consider how they will interact with those who have an interest in research and its outcomes, particularly those who provide or use tissue samples. The laws and policies governing biobanks’ physical and intellectual property holdings differ among jurisdictions, and commentators have already described what legal rights biobanks may be able to claim over materials and data.10 Potential legal claims covering genetic and genomic material include property rights over samples,11 associated patents, and other 1 For a listing of the different stakeholders in genomic research and discussion of how their interests overlap, see Morris W. Foster & Richard R. Sharp, Share and Share Alike: Deciding How to Distribute the Scientific and Social Benefits of Genomic Data, 8 NATURE REV. GENETICS 633, 634-35 (2007). 2 For a summary of how various kinds of tissue collections are defined, and the implications of different terminologies, see A. Cambon-Thomsen, E. Rial-Sebbag, & B.M. Knoppers, Trends in Ethical and Legal Frameworks for the Use of Human Biobanks, 30 EUR. RESPIRATORY J. 373, 375-76 (2007). For a summary of tissue collections in the US, see ELISA EISEMAN & SUSANNE B. HAGA, HANDBOOK OF HUMAN TISSUE SOURCES: A NATIONAL RESOURCE OF HUMAN TISSUE SAMPLES 144 (1999). For a review of biobanks in Iceland, the U.K., Sweden, and Estonia, see generally Susanne B. Haga & Laura M. Beskow, Ethical, Legal, and Social Implications of Biobanks for Genetic Research, 60 ADVANCES IN GENETICS 505 (2008) (reviewing ethical, legal, and social issues connected to tissue collections and provides background information on biobanks in Iceland, the U.K., Sweden, and Estonia as they relate to those issues). 3 See Eiseman & Haga, supra note 2, at 46-67. 4 See id. at 14-46. 5 See id. at 67-77. 6 See id. at 66-67. 7 For an example of how the UK Biobank is organized as a public-private partnership, see David E. Winickoff, Partnership in the U.K. Biobank: A Third Way for Genomic Property, 35 J. L., MED. & ETHICS 440, 441 (2007). 8 See Subhashini Chandrasekharan et al., Public-Private Interactions in Genomic Medicine: Research and Development, in GENOMIC AND PERSONALIZED MEDICINE 434, 435 (Huntington F. Willard & Geoffrey S. Ginsburg eds., 2009). See also Cambon-Thomsen, Rial-Sebbag, & Knoppers, supra note 2, at 379. 9 See Mairi Levitt & Sue Weldon, A Well Placed Trust?: Public Perceptions of the Governance of DNA Databases, 15 CRITICAL PUB. HEALTH 311, 319-20 (2005). 10 For a review of relevant case law in the United States and alternative legal arrangements relevant to many countries, see generally Jasper Bovenberg, Whose Tissue Is It Anyway?, 23 NATURE BIOTECHNOLOGY 929 (2005). 11 See JASPER A. BOVENBERG, PROPERTY RIGHTS IN BLOOD, GENES AND DATA: NATURALLY YOURS? 118-23 (2006). 48 STANFORD JOURNAL OF LAW, SCIENCE, & POLICY Vol. 1 intellectual property.12 Some rights may also attach to information in databases constructed and maintained by biobanks.13 Biobanks might also negotiate contracts with those who provide samples.14 Although we encourage biobanks to consult with stakeholders regardless of how samples and data are controlled, we focus on physical samples and associated intellectual property rights. In the United States, case law has been especially important in discussion of what rights biobanks might have. Commentators interpret Moore v. Regents of the University of California, Washington University v. Catalona, and Greenberg v. Miami Children's Hospital to mean that individuals who provide samples are less likely to retain ownership of samples than the institutions that collect them.15 In Moore, the court found that granting ownership rights to those who provided samples would hinder research but did not object when the researchers who obtained the samples used them in work that led to a granted patent.16 Additionally, in Washington University v. Catalona, the court relied in part on the informed consent documentation to hold that sample donors did not retain ownership in their tissue and that Washington University owned the samples.17 The Greenberg court similarly found that tissue donors had no title to the material they donated and that there was nothing legally objectionable per se about a researcher’s use of the samples to develop a diagnostic test and seek patents.18 If the facts were somewhat different, however, an American court might significantly depart from the reasoning in these cases to grant some property rights to those who provide tissue samples, and biobanks that ignore this possibility are vulnerable to future legal action should case law change. However, we do not focus on that (thus far) hypothetical scenario here. Regardless of how case law evolves, we suggest that biobanks should not use legal tools to avoid consulting stakeholders. Rather, legal tools should be part of ongoing consultation
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