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Beyond the Rhetoric: Population Genetics and Benefit-Sharing

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References

  • Anderlik MR (2004) Commercial biobanks and genetic research: banking without checks? In: Knoppers BM (ed) Populations and genetics: legal and socio-ethical perspectives. Martinus Nijhoff, Boston

    Google Scholar 

  • Andersen B, Arnason E (1999, June 5) Icelands’s database is ethically questionable. BMJ 318:1565

    Google Scholar 

  • Andrews L, Nelkin D (2001) Body bazaar: the market for human tissue in the biotechnology age. Crown Publishers, New York

    Google Scholar 

  • Annas G J (1993) Privacy rules for DNA databanks: protecting coded ‘‘future diaries. JAMA 270(19):2346–2350

    Article  Google Scholar 

  • Anonymous (1995, July 15) Western eyes on China’s eugenics law. Lancet 346(8968):131

    Article  Google Scholar 

  • Austin MA, Harding S, McElroy C (2003) Genebanks: a comparison of eight proposed international genetic databases. Community Genetics, Community Genet 6(1):37–45

    Article  Google Scholar 

  • Barton JH (1997) Patents and antitrust: a rethinking in light of patent breadth and sequential innovation Antitrust Law Journal, Anti LJ 65(2):449–466

    Google Scholar 

  • Baslar K (1998) The concept of the common heritage of mankind. : Martinum Nijhoff Publishers, Boston

    Google Scholar 

  • Bekelman JE, Lie Y, Gross CP (2003) Scope and impact of financial conflicts of interest in biomedical research: a systematic review JAMA 289:454

    Article  Google Scholar 

  • Benatar SR, Daar AS, Singer PA (2003) Global health ethics: the rationale for mutual caring. International Affairs 79(1):107–138, at 109 citing Singer PA, Daar AS (2001, October 5) Harnessing genomics and biotechnology to improve global health equity. Science 294:87–89

    Google Scholar 

  • Berg K (2001) The ethics of benefit-sharing. Clin Genet 59(4):240–243

    Article  Google Scholar 

  • Berger A (1999, January 2) Private company wins right to icelandic database. BMJ 318(7175):11

    Google Scholar 

  • Beskow LM et al (2001) Informed consent for population-based research involving genetics. JAMA 286(18):2315–2321

    Article  Google Scholar 

  • Biobank UK. Draft Protocol, available online: BioBank UK < http://www.ukbiobank.ac.uk/documents/ draft_protocol.pdf

    Google Scholar 

  • Blumenthal D (1996, December) Ethics issues in academic-industry relationships. Academic Medicine 71:1291–1296

    Article  Google Scholar 

  • Business Week (2002, April1 5) Balancing privacy and Biotechnology. Editorial Business Week

    Google Scholar 

  • Cardinal G, Deschenes M (2004) Surveying the population biobankers. In: Knoppers BM (ed) Populations and genetics: legal and socio-ethical perspectives. Martinus Nijhoff, Boston, pp 37–94

    Google Scholar 

  • CARTaGENE: http://www.cartagene.qc.ca/

    Google Scholar 

  • Cassese A (1990) International law in a divided world. Clarendon, Oxfordat 391

    Google Scholar 

  • Caulfield TA et al (2003) Genetic technologies, health care policy and the patent bargain. Clin Genet 63(1):15–18

    Article  Google Scholar 

  • Caulfield T (2002) Gene banks and blanket consent. Nat Rev Genet 3(8):577

    Google Scholar 

  • Chakravarti A (1999) Population genetics – making sense out of sequence. Nat Genet 21(Suppl.) 56

    Google Scholar 

  • Charter of the United Nations (1945, June 26) Can. T.S. 1945 No. 7.

    Google Scholar 

  • Cho MK et al (2003) Effects of patents and licenses on the provision of clinical genetic testing services. J Mol Diagn 5(1):3–8

    Google Scholar 

  • Collins FS, Green ED, Guttmacher AE (2003) A vision for the future of genomics research. Nature 422(6934):835–847

    Article  Google Scholar 

  • Commission on Intellectual Property Rights (2002) Integrating intellectual property rights and development policy. CIPR, London at 11 citing Mansfield E (1986) Patents and Innovation. Manage Sci 32(2):173–181

    Google Scholar 

  • Convention on Biological Diversity (CBD) (1992, June 5) 31 I.L.M. 818

    Google Scholar 

  • Council for International Organizations of Medical Sciences (CIOMS) (2002) International ethical guidelines for Biomedical research involving human subjects. CIOMS, Geneva.online: CIOMS < www.cioms.ch/frame_guidelines_nov_2002>

    Google Scholar 

  • Council of Europe (1997, April 4) Convention on Human Rights and Biomedicine (CHRBM). ETS No. 164

    Google Scholar 

  • Council of Europe (2003) Steering committee on bioethics, draft additional protocol to the convention on human rights and Biomedicine, on Biomedical Research, CDBI/INF 6

    Google Scholar 

  • Dawson E et al (2002) A first-generation linkage disequilibrium map of human chromosome 22. Nature 418(6897):544–548.

    Article  Google Scholar 

  • deCODE Genetics, An Informed Consent for Participation in a Genetic Study of (name of Disease) online: deCODE Genetics <www.decode.com >%deCODE Genetics’ website, online: % <http://www.DeCODEgenetics.com >

    Google Scholar 

  • Department of Trade and Industry (2003, June) Government Response to ‘The work of the Medical Research Council’ Report by the House of Commons Science and Technology Select Committee (HC 132). online: UK Parliament 366. <www.ost.gov.uk/research/councils/govt_response_ to_select_committee_report_on_mrc.pdf >

    Google Scholar 

  • Deschenes M et al (2001) Human genetics research DNA banking and consent: a question of ‘form’? Clin Genet 59(4):221–239

    Article  Google Scholar 

  • DNA Sciences ‘‘Welcome to the Gene Trust Project’’ online: DNA Sciences 366. <http://www.dna.com/ sectionHome/sectionHome_TheDNASciencesGeneTrustProject.asp>

    Google Scholar 

  • DNA Sciences, Press release (2003a, April 1) Genaissance pharmaceuticals enters into agreement to acquire assets of DNA sciences. online: DNA Sciences www.dna.com/pressRelease/pressRelease. jsp?site=dna&link=20030331.htm

    Google Scholar 

  • DNA Sciences, Press Release (2003b, May 12) Genaissance pharmaceuticals’ acquisition of substantially all of the assets of DNA sciences is approved. online: DNA Science <www.dna.com/ pressRelease/pressRelease.jsp?site=dna&link=20030512.htm>

    Google Scholar 

  • Eisenberg RS (1992) Genes, patents and product development. Science 257(5072):903–908

    Article  Google Scholar 

  • Estonian Genome Project, available online: Eesti Geenivaramu <http://www.geenivaramu.ee/mp3/ trykisENG.pdf>at 5

    Google Scholar 

  • Estonia, Human Genes Research Act (HGRA) RT I 2000, 104, 65, s.12 (entered into force 8 January 2001) online: Estonian Genome Project

    Google Scholar 

  • Gana RL (1995) Has creativity died in the third world? some implications of the internationalization of intellectual property. Denver J Int Law Policy 24(1):109–144

    Google Scholar 

  • Gandi I Address (Lecture presented to the World Health Assembly, 1982), cited in Gadbaw RM,Kenny LA, ‘‘India’’ in Intellectual Property Rights: Global Consensus, Global Conflict? Gadbaw RM, Richards TJ (eds) (1988) Westview Press, Boulder,)

    Google Scholar 

  • GeneWatch UK (2002, November) Biobank UK – A Good Research Priority? Parliamentary Briefing No. 3. available online: GeneWatch <http://www.genewatch.org/HumanGen/Publications/ MP_Briefs.htm>

    Google Scholar 

  • Gold ER (1996) Body parts: Property rights and the ownership of human biological materials. Georgetown University Press, Washington)

    Google Scholar 

  • Gostin LO, Hodge JG (1999) Genetic privacy and the law: an end to genetic exceptionalism Jurimetrics 40(1):21–58

    Google Scholar 

  • Greely HT (1997) The control of genetic research: involving the ‘groups between’ Hous L Rev 33:1397

    Google Scholar 

  • Greely HT (2000) Iceland’s plan for genomics research: facts and implications. Jurimetrics 40(2):153–191

    Google Scholar 

  • Habeck M (2002, October 17) Estonia jumps on the gene bank train. The Scientist (). online: The Scientist.com 366. <www.biomedcentral.com/news/20021017/08>

    Google Scholar 

  • Haga SB, Khoury MJ, Burke W (2003) Genomic profiling to promote a healthy lifestyle: not ready for prime time. Nat Genet 34(4):347–350

    Article  Google Scholar 

  • Hamilton MA (1997) The TRIPs agreement: imperialistic, outdated, and overprotective. In: Moore AD (ed) Intellectual property: moral, legal and international dilemmas. Rowman & Littlefield, Boulder

    Google Scholar 

  • Harrison CH (2002) Neither moore nor the market: alternative models for compensating contributors of human tissue. Am J Law Med 28(1):77–105

    Google Scholar 

  • Harvard School of Public Health (2003, May 30) Conclusion of U.S. Government’s Inquiry into HSPH Genetic Research in China. available online: Harvard University <www.hsph.harvard.edu/ press/releases/pres05302003.html>

    Google Scholar 

  • Hawkins D (2002, February 12)Keeping secrets. U.S. News & World Report

    Google Scholar 

  • House of Commons Science and Technology Committee, ‘‘The Work of the Medical Research Council: Third Report of Session 2002–03’’ available online: UK Parliament <www.publications.parliament.uk/ pa/cm200203/cmselect/cmsctech/132/132.pdf >at 28

    Google Scholar 

  • Human Genetics Commission (2002) Inside information: balancing interests in the use of personal genetic data. A Summary Report by the Human Genetics Commission (2002, May). Available online: http://www.hgc.gov.uk/ UploadDocs/DocPub/Document/insideinformation_summary.pdf

    Google Scholar 

  • Human Genome Organisation Ethics Committee (2000) HUGO Statement on Benefit-Sharing (SBS) Genome Digest 6:7–9

    Google Scholar 

  • Human Genome Organisation Ethics Committee (1996) HUGO Statement on the Principled Conduct of Genetic Research (PCGR) Genome Digest 3:2–3

    Google Scholar 

  • Iceland Act on a Health Sector Database, no.139/1998 (Passed by Parliament 123rd Sess., 1998–99). Article 2 Iceland, Ministry of Health and Social Security <http://www.raduneyti.is/interpro/htr/ htr.nsf/pages/lawsandregs>>

    Google Scholar 

  • Iceland Act on Biobanks, no.110/2000. Both Acts are available online: Iceland, Ministry of Health and Social Security <http://www.raduneyti.is/interpro/htr/htr.nsf/pages/lawsandregs>

    Google Scholar 

  • Juengst ET (1998) Group identity and human diversity: keeping biology straight from culture. Am J Hum Genet 63(3):673–677

    Article  Google Scholar 

  • Kaiser J (2003) African-American population biobank proposed. Science 300(5625):1485

    Article  Google Scholar 

  • Kaiser J (2002) Population databases boom, from Iceland to the U.S. Science 298(5596):1158–1161

    Article  Google Scholar 

  • Knoppers BM et al (2000) ‘‘HUGO Urges Genetic Benefit-Sharing’’. Community Genet 3(2):88–92

    Article  Google Scholar 

  • Knoppers BM (2000[1997]) Population genetics and benefit sharing. Community Genet. 3(4):212–214

    Article  Google Scholar 

  • Knoppers BM (1999) Biotechnology: sovereignty and sharing. In: Caulfield TA, Williams-Jones B (eds) The commercialization of genetic research: ethical, legal and policy issues. Kluwer Academic/Plenum Publishers, New York, pp 1–11

    Google Scholar 

  • Knoppers BM (1991) Human dignity and genetic heritage. Law Reform Commission of Canada, Ottawa

    Google Scholar 

  • Litman M, Robertson G (1996) The common law status of genetic material. In: Knoppers BM (ed) Legal rights and human genetic material. Emond Montgomery Publications Ltd., Toronto, pp 51–81

    Google Scholar 

  • Lowrance WW (2001) The promise of human genetic databases: high ethical as well as scientific standards are needed BMJ 322(7293):1009–1010

    Article  Google Scholar 

  • Markel H (1992) The stigma of disease: implications of genetic screening Am J Med 93:209

    Article  Google Scholar 

  • Marshall E (2001) Company plans to bank human DNA profiles Science 291(5504):575

    Article  Google Scholar 

  • Mathew C (2001) Postgenomic technologies: hunting the genes for common disorders. BMJ 322(7293):1031–1034

    Article  Google Scholar 

  • McClellan MB (2003, June 23) Lecture, BIO 2003, Washington DC. available online: BIO 2003 <http://www.bio.org/events/2003/media/mcclellan_0623.asp>

    Google Scholar 

  • McInnis MG (1999) The assent of a nation: genethics and Iceland. Clinical Genetics 55(4):234–239

    Article  Google Scholar 

  • Merges RP, Nelson RR (1990) On the complex economics of patent scope Colum L Rev 90:839

    Article  Google Scholar 

  • Meslin EM (2002) Raising the bar in research ethics: traditional obligations are not enough. Postgraduate Medicine 112:5

    Article  Google Scholar 

  • National Human Genome Center, Genomic Research in the African Diaspora (GRAD) <www.genomecentre.howard.edu/grad.html>

    Google Scholar 

  • Network of Applied Genetic Medicine of Quebec (FRSQ), ‘‘Cartagene in Brief’’ available online: RMGA www.rmga.qc.ca

    Google Scholar 

  • Participants in the 2001 Conference on Ethical Aspects of Research in Developing Countries (2002) Fair benefits for research in developing countries. Science 298(5601):2133–2134

    Article  Google Scholar 

  • Pennisi E (1998) Brazil wants cut of its biological bounty. Science 279(5356):1445

    Article  Google Scholar 

  • Pomfret J, Nelson D (2000, December 20) In Rural China, a genetic mother lode. Washington Post, A1

    Google Scholar 

  • Robertson JA (1999) Privacy issues in second stage genomics. Jurimetrics 40(1):59–76

    Google Scholar 

  • Roshwald M (1958–59) The concept of human rights. Philosophy and Phenomenological Research 19(3):354–379

    Article  Google Scholar 

  • Shiva V (1999, November) The real costs of globalization. (Lecture presented to The Parkland Institute’s 3rd Annual Conference, ‘‘The Corporation as Big Brother: Challenging the Privatization of Knowledge’’.) Edmonton, Alberta

    Google Scholar 

  • Shiva V (1997)Biopiracy: the plunder of nature and knowledge. Between the Lines, Toronto

    Google Scholar 

  • Sieghart P (1986) The lawful rights of mankind. Oxford University Press, New York:) at 42

    Google Scholar 

  • Staples S (2000) Human resource: Newfoundland’s 300-year-old genetic legacy has triggered gold rush. Report on Business 17(3):117–120

    Google Scholar 

  • Statistics Canada (2002b) A profile of spin-off firms in the biotechnology sector. Innovation Analysis Bulletin 4(1):12

    Google Scholar 

  • Statistics Canada (2002a) Estimates of total expenditures on research and development in the health fields in Canada, 1988 to 2001. available online: Statistics Canada <www.statcan.ca/cgi-bin/downpub/listpub.cgi?catno=88F0006XIE2002007>

    Google Scholar 

  • Szalavitz M (2001) Race and the genome. online: Howard University Human Genome Center <www.genomecenter.howard.edu/article.htm>

    Google Scholar 

  • The Bonn Guidelines on Access to Genetic Resources and Fair and Equitable Sharing of the Benefits Arising out of their Utilization (2002) UN Doc UNEP/CBD/COP/6/20 online: Convention on Biological Diversity <www.biodiv.org/decisions/default.asp?m=cop-06&d=24>

    Google Scholar 

  • The Gene Trust Bill of Rights online: DNA Sciences, <http://www.dna.com/sectionHome/ SectionHome.jsp?site=dna&link=The GeneTrustBillofRights.htm>

    Google Scholar 

  • The International Covenant on Economic, Social and Cultural Rights (ICESCR) (1966) G.A. Res. 2200, U.N. GAOR, 21st Sess., Supp. No. 16 at 49, U.N. Doc. A/6316; International Covenant on Civil and Political Rights (ICCPR), 19 December 1966, 999 U.N. T.S. 171, arts. 9–14, Can. T.S. 1976 No. 47, 6 I.L.M. 368

    Google Scholar 

  • Trebilcock MJ, Iacobucci EM (2003) Privatization and accountability Harv Law Rev 116(5):1422–1453

    Article  Google Scholar 

  • United Nations Educational, Scientific and Cultural Organisation (UNESCO) (1997) Universal Declaration on the Human Genome and Human Rights (UDHG), 29th Sess., 29 C/Resolution 19

    Google Scholar 

  • United Nations Educational, Scientific and Cultural Organisation (UNESCO) (2003), International Declaration on Human Genetic Data, 32nd Sess., 32 C/29 Add.2. The text of the declaration as finalized by the working group of Commission III on 7 October 2003 is included as Section III of this document

    Google Scholar 

  • United Nations Convention on the Law of the Sea (1982) UN Doc. A/CONF.62/122 art. 136

    Google Scholar 

  • Universal Declaration of Human Rights (UDHR) (1948) GA Res. 217(III), UN GAOR, 3d Sess., Supp. No. 13, UN Doc. A/810

    Google Scholar 

  • Varmus (2002) Harold building a global culture of science. Lancet 360(Suppl):1

    Google Scholar 

  • Weijer C (2000) Benefit sharing and other protections for communities in genetic research. Clinical Geneti 58(5):367–368

    Article  Google Scholar 

  • Weijer C, Goldsand G, Emanuel EJ (1999) Protecting communities in research: current guidelines and limits of extrapolation. Nat Genet 23(3):275–280

    Article  Google Scholar 

  • Wertz DC, Fletcher JC (1998) Ethical and social issues in prenatal sex selection: a survey of geneticists in 37 nations. Soc Sci Med 46(2):255–273

    Article  Google Scholar 

  • Wertz DC (2002) Did eugenics ever die? Nat Rev Genet 3(6):408

    Google Scholar 

  • World Health Organization (2002) Advisory Committee on Health Research, Genomics and World Health Organization World Health, Genomics and World Health. World Health Organization, Geneva)

    Google Scholar 

  • World Trade Organization (Press Release), ‘‘Decision Removes Final Patent Obstacle to Cheap Drug Imports’’ 30 August 2003, online WTO: <www.wto.org/english/news_e/pres03_e/pr350_e.htm>

    Google Scholar 

  • World Trade Organization Declaration on the TRIPS Agreement and Public Health (Doha Statement), 2001, Doc. WT/MIN(01)/Dec/2, available online: http://www.wto.org/english/thewto_e/minist_ e/min01_e/mindecl_trips_e.htm

    Google Scholar 

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Authors and Affiliations

  1. Health Law Institute, Faculty of Law, University of Alberta, Alberta, Canada

    Lorraine Sheremeta & Bartha Maria Knoppers

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  1. Lorraine Sheremeta
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  2. Bartha Maria Knoppers
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Editors and Affiliations

  1. University of Saskatchewan, Saskatoon, SK, Canada

    W.B. Peter

  2. University of Calgary, AB, Canada

    Chika B. Onwuekwe

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Sheremeta, L., Knoppers, B.M. (2007). Beyond the Rhetoric: Population Genetics and Benefit-Sharing. In: Peter, W., Onwuekwe, C.B. (eds) Accessing and Sharing the Benefits of the Genomics Revolution. The International Library of Environmental, Agricultural and Food Ethics, vol 11. Springer, Dordrecht. https://doi.org/10.1007/978-1-4020-5822-6_8

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