Skip to main content Accessibility help
×
  • Cited by 42
Publisher:
Cambridge University Press
Online publication date:
February 2013
Print publication year:
2013
Online ISBN:
9781139051798

Book description

Currently, the ethics infrastructure – from medical and scientific training to the scrutiny of ethics committees – focuses on trying to reform informed consent to do a job which it is simply not capable of doing. Consent, or choice, is not an effective ethical tool in public ethics and is particularly problematic in the governance of genetics. Heather Widdows suggests using alternative and additional ethical tools and argues that if individuals are to flourish it is necessary to recognise and respect communal and public goods as well as individual goods. To do this she suggests a two-step process – the 'ethical toolbox'. First the harms and goods of the particular situation are assessed and then appropriate practices are put in place to protect goods and prevent harms. This debate speaks to core concerns of contemporary public ethics and suggests a means to identify and prioritise public and common goods.

Reviews

‘Widdows’ argument … not only clearly demonstrates the need for new ways of thinking about contemporary issues in genetics and genomics, but also highlights the ways in which ethics itself co-evolves with science.’

Ruth Chadwick - Distinguished Research Professor, Cardiff University and Director, Cesagen

‘If bioethics is to be less blinkered, it needs a new approach - one that collects the required ‘tools’ and then applies them in a way that is responsive to the full range of material harms and goods. The Connected Self is a compelling read.’

Roger Brownsword - Kings College London and Chair, UK Biobank Ethics and Governance Council

‘With a battery of philosophical arguments, Widdows soon convinces the reader that our current ethical framework, the choice model, has to go … Informative, scholarly and yet extremely accessible.’

Lisa Bortolotti - Birmingham University

‘In setting out how genetics makes ethical individualism redundant - itself an important and timely argument - Heather Widdows at the same time puts neo-liberal ‘morality’ firmly in its place.’

Bob Brecher - University of Brighton

‘Provides a strong and urgently needed call to ‘clean up our act’ as regards the ethical governance of genetics … Reading this book reminded me why I became an ethicist.’

Sigrid Sterckx - Ghent University

'As with all good ethicists, Widdows takes on the ambitious, substantive, and difficult task of offering a foundation for ethical inquiry. Her main contention is that individualistic ethical frameworks are fundamentally flawed because individuals are incomplete, and are best understood as parts of a community.'

William Simkulet Source: Metapsychology Online Reviews

'In short, there is plenty of room for piqued interests. Perhaps this is ultimately what Widdows wants, and in this sense, The Connected Self shines. Its message is valuable and forces you to think. For our individual and common good, may it ignite impassioned bioethical debate.'

Edward S. Dove Source: New Genetics and Society

'The richness of Widdows’ analyses is clear. Her reflections and insights for genetic governance in The Connected Self should be recommended to emerging practitioners in genomics, law and/or health policy. No doubt, the book makes a valuable contribution to the movement towards a more inclusionary, reflexive and contextually embedded bioethics for genetic governance.'

Vasiliki Rahimzadeh Source: Bioéthique Online (bioethiqueonline.ca)

Refine List

Actions for selected content:

Select all | Deselect all
  • View selected items
  • Export citations
  • Download PDF (zip)
  • Save to Kindle
  • Save to Dropbox
  • Save to Google Drive

Save Search

You can save your searches here and later view and run them again in "My saved searches".

Please provide a title, maximum of 40 characters.
×

Contents

Bibliography

Bibliography

23andme. www.23andme.com (accessed 27 March 2012)
Alcoff, L. (ed.) 2006. Identity Politics Reconsidered. New York, NY: Palgrave Macmillan
Allen, J. and McNamara, B. 2011. ‘Reconsidering the value of consent in biobank research’, Bioethics 25: 155–66
Allmark, P. and Mason, S. 2006. ‘Should desperate volunteers be included in randomised controlled trials?’, Journal of Medical Ethics 32: 548–53
ANHMRC (Australian National Health and Medical Research Council) 1991. Guidelines on Ethical Matters in Aboriginal and Torres Strait Islander Health Research. www.nhmrc.gov.au/guidelines/publications/e11 (accessed 27 March 2012)
ÁrnasonE. 2002. ‘Personal identifiability in the Icelandic Health Sector Database’, The Journal of Information, Law and Technology. www2.warwick.ac.uk/fac/soc/law/elj/jilt/2002_2/arnason/ (accessed 27 March 2012)
Ao, A., Wells, D., Handyside, A. H., Winston, R. M. L. and Delhanty, J. D. A. 1998. ‘Preimplantation genetic diagnosis of inherited cancer: familial adenomatous polyposis coli’, Journal of Assisted Reproduction and Genetics 15: 140–44
Ashcroft, R. 2007. ‘Should genetic information be disclosed to insurers? No.’, British Medical Journal 334: 1197
Austin, L. M. and Lemmens, T. 2009. ‘Privacy, consent, and governance’, in Dierickx, K. and Pascal Borry, P. (eds.), New Challenges for Biobanks: Ethics, Law and Governance. Antwerpen/Oxford: Intersentia, pp.111–22
Azétsop, J. and Rennie, S. 2010. ‘Principlism, medical individualism, and health promotion in resource-poor countries: can autonomy-based bioethics promote social justice and population health?’, Philosophy, Ethics, and Humanities in Medicine 5:1. www.peh-med.com/content/5/1/1 (accessed 27 March 2012)
Barker, J. 2004. ‘The Human Genome Diversity Project: “Peoples”, “populations” and the cultural politics of identification’, Cultural Studies 18: 571–606
Barlow-Stewart, K., Burnett, L., Proos, A., Howell, V., Huq, F., Lazarus, R. and Aizenberg, H. 2003. ‘A genetic screening programme for Tay-Sachs disease and cystic fibrosis for Australian Jewish high school students’, Journal of Medical Genetics 40:e45
Barnett, J. and Adger, N. W. 2003. ‘Climate dangers and atoll countries’, Climatic Change 61: 321–37
Bartels, D. M. 2001. ‘Family covenants and confidentiality within families’, The American Journal of Bioethics 1: 15–16
BBC report 2009. ‘Rise in measles “very worrying”’. http://news.bbc.co.uk/1/hi/health/7872541.stm (accessed 27 March 2012)
BBC report 2011. ‘Everyone “to be research patient”, says David Cameron’. www.bbc.co.uk/news/uk-16026827 (accessed 27 March 2012)
Beauchamp, T. L. 1995. ‘Principlism and its alleged competitors’, Kennedy Institute of Ethics Journal 5(3), 181–98
Beauchamp, T. L. and Childress, J. F. 2008. Principles of Biomedical Ethics (6th edn). New York, NY: Oxford University Press
The Belmont Report: Ethical Principles and Guidelines for the protection of human subjects of research 1979. National Institutes of Health. http://ohsr.od.nih.gov/guidelines/belmont.html#ethical (accessed 27 March 2012)
Berg, C. and Fryer-Edwards, K. 2008. ‘The Ethical challenges of direct to consumer testing’, Journal of Business Ethics 77: 17–31
Bieber, F. R., Brenner, C. H. and Lazer, D. 2006. ‘Finding criminals through DNA of their relatives’, Science online. http://harvardextension.files.wordpress.com/2010/11/bieber-science.pdf (accessed 27 March 2012)
BMA 2007a. ‘The right to health: a toolkit for health professionals’. www.bma.org.uk/images/Righttohealth_tcm41–147084.pdf (accessed 27 March 2012)
BMA 2007b. ‘Mental Capacity Act tool kit’. www.bma.org.uk/images/MentalCapacityToolKit%20July2008_tcm41–175571.pdf (accessed 27 March 2012)
Boggio, A. 2005. ‘Charitable trusts and human research genetic databases: the way forward’, Genomics Society and Policy 1: 41–9
Bonn Guidelines on Access to Genetic Resources and Fair and Equitable Sharing of the Benefits Arising out of their Utilization. 2002. www.cbd.int/doc/publications/cbd-bonn-gdls-en.pdf (accessed 27 March 2012)
Bortolotti, L. and Widdows, H. 2011. ‘The right not to know: the case of psychiatric disorders’, Journal of Medical Ethics 37: 673–6
Bradley, F. H. 1927. ‘My station and its duties’ in Ethical Studies. Oxford University Press, pp.160–213
Boyd, K. M., Higgs, R., and Pinching, A. J. (eds.) 1997. The New Dictionary of Medical Ethics. London: BMJ Publishing Group
Brock, D. W. 2001. ‘Genetics and confidentiality’, The American Journal of Bioethics 1: 34–5
Brownsword, R. 2009. ‘Rights, responsibilities and stewardship: beyond consent’ in Widdows and Mullen 2009. pp. 99–126
Buchanan, A. 2000. ‘Trust in managed care organisations’, Kennedy Institute of Ethics Journal 10: 189–212
Busby, H. and Martin, P. 2006. ‘Biobanks, national identity and imagined communities: the case of UK Biobank’, Science as Culture 15: 237–51
Callahan, D. 2003. ‘Principlism and communitarianism’, Journal of Medical Ethics 29: 287–91
Cambon-Thomsen, A. 2004. ‘The social and ethical issues of post-genomic human biobanks’, Nature Reviews Genetics 5: 866–73
Cambon-Thomsen, A., Rial-Sebbag, E., and Knoppers, B. M. 2007. ‘Trends in ethical and legal frameworks for the use of human biobanks’, European Respiratory Journal 30, 2: 373–82
Campbell, A. V. 2009. The Body in Bioethics. New York, NY: Routledge-Cavendish
Caney, S. 2005. Justice Beyond Borders: A Global Political Theory. Oxford University Press
Caney, S. 2009. ‘Climate change and the future: time, wealth and risk’, Journal of Social Philosophy 40: 163–86
Caney, S. 2010. ‘Climate change and the duties of the advantaged’, Critical Review of International Social and Political Philosophy 13: 203–28.
Cars, O., Diaz Högberg, L., Murray, M., Nordberg, O., Sivaraman, S., Stålsby, C., Lundborg, A., So, A. D. and Tomson, G. 2008. ‘Meeting the challenge of antibiotic resistance’, British Medical Journal 337: 1438
CARTaGENE. www.cartagene.qc.ca/index.php?lang=english (accessed 27 March 2012)
Carter, I. 1995. ‘The independent value of freedom’, Ethics 105: 819–45
Casado Da Rocha, A. and Seoane, J. A. 2008. ‘Alternative consent models for biobanks: the new Spanish law on biomedical research’, Bioethics 22: 440–47
Cassa, C., Schmidt, B. and Kohane, I. 2008. ‘My sister’s keeper?: genomic research and the identifiability of siblings’, BMC medical genomics. www.biomedcentral.com/1755–8794/1/32 (accessed 27 March 2012)
Castillio, F. A. 2002. ‘Limiting factors impacting on voluntary first person informed consent in the Philippines’, Developing World Bioethics 2 (1): 21–7
Cajete, G. 2000. Native Science: Natural Laws of interdependence. Santa Fe, NM: Clear Light Books
Caulfield, T., Brown, R. B. and Meslin, E. M. 2007. ‘Challenging a well established consent norm?: one time consent for biobank research’, Journal of International Biotechnology Law 4: 69–74
Caulfield, T., McGuire, A. L., Cho, M., Buchanan, J. A. and Burgess, M. M. 2008. ‘Research ethics recommendations for whole-genome research: consensus statement’, PLoS Biology 6: e73. www.plosbiology.org/article/info%3Adoi%2F10.1371%2Fjournal.pbio.0060073 (accessed 27 March 2012)
CBD (Convention on Biological Diversity). www.cbd.int/ (accessed 28 March)
CBD (Convention on Biological Diversity) 1992 (version). www.cbd.int/doc/legal/cbd-en.pdf (accessed 28 March)
CBD (Convention on Biological Diversity) Conference of the Parties 1995. Decision II/11. www.cbd.int/decision/cop/?id=7074 (accessed 28 March 2012)
CBD (The Convention on Biological Diversity) 2010 ‘Nagoya Protocol’. www.cbd.int/abs/ (accessed 27 March 2012)
CDC (Centers for Disease Control and Prevention). www.cdc.gov/vaccines/vac-gen/laws/state-reqs.ht (accessed 27 March 2012)
Chadwick, R. 2009. ‘The right to know and the right not to know – ten years on’ in Rehmann-Sutter, C. and Müller, H. (eds.), Disclosure Dilemmas: Ethics of Genetic Prognosis After the ‘Right to Know/Not to Know’ Debate. Aldershot: Ashgate, pp.9–19
Chadwick, R. and Berg, K. 2001. ‘Solidarity and equity: new ethical frameworks for genetic databases’, Nature Reviews Genetics 2: 318–21
Chadwick, R., Levitt, M. and Shickle, D. (eds.) 1997. The Right to Know And The Right Not To Know. Aldershot: Ashgate
Claes, E., Evers-Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L. and Eric Legius, E. 2003. ‘Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients’, American Journal of Medical Genetics 116: 11–19
Clayton, T. M., Whitaker, J. P. and Maguire, C. N. 1995. ‘Identification of bodies from the scene of a mass disaster using DNA amplification of short tandem repeat (STR) loci’, Forensic Science International 76: 7–15
Clouser, K. D. and Gert, B. 1990. ‘A critique of principlism’, Journal of Medicine and Philosophy 15: 219–36
Conradi, P. 1997. ‘Editor’s preface’ in Conradi, P. 1997. Existentialists and Mystics: Iris Murdoch’s writings on Philosophy and Literature. London: Chatto & Windus, pp.xix–xxx.
Cordell, S., Widdows, H., Bellivier, F. and Noiville, C. 2011. ‘Lost property? Legal compensation for destroyed sperm: a reflection and comparison drawing on UK and French perspectives’, Journal of Medical Ethics 37: 747–51
Corrigan, O. P. 2004. ‘Pharmacogenetics, ethical issues: review of the Nuffield Council on Bioethics Report’, Journal of Medical Ethics, 31: 144–8
Council of Europe. Convention for the Protection of Human Rights and the Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, 1997. http://conventions.coe.int/Treaty/en/Treaties/html/164.htm (accessed 27 March 2012)
Couzin, J. 2008. ‘Whole-genome data not anonymous, challenging assumptions’, Science 321: 1278
Curren, L., Boddington, P., Gowans, H., Hawkins, N., Kanellopoulou, N., Kaye, J. and Melham, K. 2010. ‘Identifiability, genomics and UK Data Protection law’, European Journal of Health Law 17: 329–44
Davis, D. S. 2004. ‘Genetic research & communal narratives’, The Hastings Center Report: 40–49. www.thehastingscenter.org/pdf/publications/hcr_jul_aug_2004_article1.pdf (accessed 27 March 2012)
Daugherty, C. 1999. ‘Impact of therapeutic research on informed consent and the ethics of clinical trials: a medical oncology perspective’, Journal of Clinical Oncology 17: 1601–17
deCODEme. www.decodeme.com (accessed 27 March 2012)
Department of Health, Association of British Insurers. 2005. ‘Concordat and moratorium on genetics and insurance’. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4105905 (accessed 27 March 2012)
Dickenson, D. 1997. Property, Women and Politics: Subjects or Objects?Cambridge: Polity Press.
Dickenson, D. 2002. ‘Commodification of human tissue: Implications for feminist and development ethics’, Developing World Bioethics 2: 55–63.
Dickenson, D. 2004. ‘Consent, commodification & benefit sharing in genetic research’, Developing World Bioethics 4: 109–24
Dickenson, D. 2006. ‘Philosophical assumptions and presumptions about trafficking for prostitution’ in van den Anker, C. and Doomernick, J. (eds.) Trafficking and Women’s Rights. London: Palgrave, pp.43–53
Dickenson, D. 2007. Property in the Body: Feminist Perspectives. Cambridge University Press
Dickenson, D. 2008. Body Shopping: The Economy Fuelled by Flesh and Blood. Oxford: One World
Doodeward v. Spence (1908) 6 CLR 406
Donchin, A. and Purdy, L. 1999. Embodying Bioethics: Recent Feminist Advances. Lanham, MD: Rowman and Littlefield
Doukas, D. J. and Berg, J. W. 2001. ‘The family covenant and genetic testing’, American Journal of Bioethics 3: 2–16
Dworkin, G. 1988. The Theory and Practice of Autonomy. Cambridge University Press
Dworkin, R. 2005. Taking Rights Seriously. London: Duckworth
Eager, P. W. 2004. Global Population Policy. Aldershot: Ashgate
Elger, B. 2010. Ethical Issues of Human Genetic Databases: A Challenge to Classical Research Ethics?Farnham: Ashgate
Elger, B., Biller-Andorno, N., Mauron, A. and Capron, A. M. (eds.) 2008. Guidelines on Biobanks: Emerging Consensus and Unresolved Controversies in Ethical Issues in Governing Biobanks: Global Perspectives. Farnham: Ashgate
Elger, B. and Caplan, A. L. 2006. ‘Consent and anonymization in research involving biobanks: Differing terms and norms present serious barriers to an international framework’, EMBO Reports 7: 661–6
Enserink, M. 1998. ‘Physicians wary of scheme to pool Icelanders’ genetic data’, Science 281: 890–91
Eriksson, S. and Helgesson, G. 2005. ‘Potential harms, anonymization, and the right to withdraw consent to biobank research’, European Journal of Human Genetics 13: 1071–6
ESAC (European Surveillance of Antimicrobial Consumption). http://app.esac.ua.ac.be/public/index.php/en_gb/resistance/what-are-the-consequences (accessed 27 March 2012)
Estonian Genome Project. www.genomics.ee/files/menu/egp.pdf (accessed 27 March 2012)
Evans, J. H. 2000. A sociological account of the growth of principlism. Hastings Center Report, 30(5): 31–8
Feinberg, J. 1986. The Moral Limits of the Criminal Law (Vol. 3): Harm to Self. Oxford University Press
Fowke, K. R., Nagelkerke, N. J., Kimani, J., Simonsen, J. N., Anzala, A. O., Bwayo, J. J., MacDonald, K. S., Ngugi, E. N. and Plummer, F. A. 1996. ‘Resistance to HIV-1 infection among persistently seronegative prostitutes in Nairobi, Kenya’, Lancet 348: 1347–51
Frankfurt, H. 1989. ‘Freedom of the will and the concept of a person’ in Christman, J. (ed.), The Inner Citadel: Essays on Individual Autonomy. New York, NY: Oxford University Press
Fullerton, S. M., Anderson, N. R., Guzauskas, G., Freeman, D. and Fryer-Edwards, K. 2010. ‘Meeting the governance challenges of next-generation’, Biorepository Research Science Translational Medicine 2: 15
Ganguli-Mitra, A. 2008. ‘Benefit sharing and remuneration’ in Elger, Biller-Andorno, Mauron and Capron (eds.), pp. 121–30
Generation Scotland. www.generationscotland.org/ (accessed 27 March 2012)
Genomics Law Report 2009. Genetic Exceptionalism and the Precautionary Principle. www.genomicslawreport.com/wp-content/plugins/as-pdf/generate.php?post=1233
Gibbons, S. 2007. ‘Are UK genetic databases governed adequately? A comparative legal analysis’, Legal Studies, 27: 312–42
Gibbons, S., Kaye, J., Smart, A., Heeney, C. and Parker, M. 2007. ‘Governing genetic databases: Challenges facing research regulation and practice’, Journal of Law and Society 34: 163–89
Gilligan, C. 1982. In a Different Voice. Cambridge, MA: Harvard University Press
Gillon, R. 1985. ‘Rights’, British Medical Journal 290: 1890–91
Gillon, R. 2003. ‘Ethics needs principles – four can encompass the rest – and respect for autonomy should be first among equals’, Journal of Medical Ethics 13: 307–12
Ginsburg, G. S. and McCarthy, J. J. 2001. ‘Personalized medicine: revolutionizing drug discovery and patient care’, Trends in Biotechnology 19: 491–6
GMC (General Medical Council). ‘Tomorrow’s doctors’. www.gmc-uk.org/10a_annex_a.pdf_25398162.pdf (accessed 27 March 2012)
Gold, E. R. 1996. Body Parts: Property Rights and Ownership of Human Biological Materials. Georgetown University Press
Gosseries, A. 2004. ‘Historical emissions and free riding’, Ethical Perspectives 11: 36–60
Gottlieb, K. 1988. ‘Human biological samples and the laws of property’ in Weir, R. F. (ed.), Stored tissue samples. University of Iowa Press, pp.182–97
Gould, C. C. 2004. Globalising democracy and human rights. Cambridge University Press
Goyal, M., Mehta, R. L., Schneiderman, L. J. and Sehgal, R. A. 2002. ‘Economic and health consequences of selling a kidney’, Journal of the American Medical Association 288: 1589–93
Graham, K. 2002. Practical Reasoning in a Social World. Cambridge University Press
Greely, H. T. 2000. ‘Iceland’s plan for genomics research: facts and implications’, Jurimetrics 40: 153–91
Greely, H. T. 2001. ‘Informed consent and other ethical issues in human population genetics’, Annual Review of Genetics 35: 785–800
Greely, H. T. 2007. ‘The uneasy ethical and legal underpinnings of large-scale genomic biobanks’, Annual Review of Genomics, Human Genetics 8: 344–64
Greenbaum, D., Du, J. and Gerstein, M. 2008. ‘Genomic anonymity: have we already lost?’, The American Journal of Bioethics 8: 71–81
Gross, S. J., Pletcher, B. A. and Monaghan, K. G. 2008. ‘Carrier screening in individuals of Ashkenazi Jewish descent’, Genetics in Medicine 10: 54–6.
Grotzer, M. A., Shalaby, T., Poledna, T. and the Swiss Pediatric Oncology Group (SPOG) 2003. ‘Establishment of the Swiss Pediatric Oncology Group Tumor Bank’, SIAK SPOG 180–84
GSK (GlaxoSmithKline). ‘The Convention on Biological Diversity’. www.gsk.com/policies/GSK-on-the-convention-on-biological-diversity.pdf (accessed 27 March 2012)
GSK (GlaxoSmithKline). 2010. ‘Corporate responsibility report’. www.gsk.com/responsibility/cr-report-2010/access-to-medicines/flexible-pricing/least-developed-countries.htm (accessed 27 March 2012)
Guillén, M., Victoria Lareu, M., Pestoni, C., Salas, A. and Carracedo, A. 2000. ‘Ethical-legal problems of DNA databases in criminal investigation’, Journal of Medical Ethics 26: 266–71
Gulcher, J. R. and Steffanson, K. 2000. ‘The Icelandic Healthcare Database and informed consent’, New England Journal of Medicine 342: 1827–30
Gurwitz, D. and Bregman-Eschet, Y. 2009. ‘Personal genomics services: whose genomes?’, European Journal of Human Genetics 17: 883–9
Habermas, J. 1994. ‘Three normative models of democracy’, Constellations 1: 1–10.
Haddow, G., Laurie, G., Cunningham-Burley, S. and Hunter, K. G. 2007. ‘Tackling community concerns about commercialisation and genetic research: A modest interdisciplinary proposal’, Social Science & Medicine 64: 272–82
Hallowell, N. 1999. ‘Doing the right thing: genetic risk and responsibility’, Sociology of Health & Illness 21: 597–621
Hamburg, M. A. and Collins, F. S. 2010. ‘The path to personalized medicine’, New England Journal of Medicine 363: 301–4
Hansson, M. G. 2005. ‘Building on relationships of trust in biobank research’, Journal of Medical Ethics 35: 415–18
Hansson, M. G., Dillner, J., Bartram, C. R., Carlson, J. A., Helgesson, G. 2006. ‘Should donors be allowed to give broad consent to future biobank research?’, Lancet Oncology 7: 266–9
Harman, B. 1995. Reproductive Rights and Wrongs: The Global Politics of Population Control. Cambridge, MA: South End Press
Harmon, S. H. E. and Laurie, G. T. 2010. ‘Yearworth vs North Bristol NHS Trust: property, principles, precedents and paradigms’, Cambridge Law Journal 69: 476–93
Harris, J. 1985. The Value of Life: An Introduction to Medical Ethics. London: Routledge and Kegan Paul
Hauskeller, C. 2011. ‘Direct to consumer genetic testing’, British Medical Journal 342: 2317
Havasupai Tribe. Official website. www.havasupai-nsn.gov/index.html (accessed 27 March 2012)
Hawkins, N., de Vries, J. and Boddington, P. 2009. ‘Data sharing in genomics – re-shaping scientific practice’, Nature Reviews Genetics 10: 331–5
Häyry, M. and Takala, T. 2001. ‘Genetic information, rights, and autonomy’, Theoretical Medicine 22: 403–14
Held, V. 2006. The Ethics of Care: Personal, Political and Global. Oxford University Press
HFEA (Human Fertilization and Embryology Authority). 2011. Public consultation on sperm and egg donation. www.hfea.gov.uk/6285.html (accessed 27 March 2012)
Hofmann, B. 2009. ‘Broadening consent – and diluting ethics?’, Journal of Medical Ethics 35: 125–9
Hogarth, S., Javitt, G. and Melzer, D. 2008. ‘The current landscape for direct-to-consumer genetic testing: legal, ethical, and policy issues’, Annual Review of Genomics and Human Genetics 9: 161–82
Hollingsworth, W. G. 1996. Ending the Explosion Population Policies and Ethics for a Humane Future. Santa Ana, CA: Seven Locks Press
Hollis, A. and Pogge, T. 2008. ‘The Health Impact Fund: making new medicines accessible to all’. www.yale.edu/macmillan/igh/hif.html (accessed 14 September 2010)
Holm, S. 2007. ‘Should genetic information be disclosed to insurers? Yes’, British Medical Journal 334: 1196
Holm, S. 2011. ‘Withdrawing from research – a rethink in the context of research biobanks’, HealthCare Analysis 19: 207–19
Homer, N., Szelinger, S., Redman, M., Duggan, D., Tembe, W., Muehling, J., Pearson, J. V., Stephan, D. A., Nelson, S. F. and Craig, D. W. 2008. ‘Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays’, PLoS Genetics 4. www.plosgenetics.org/article/info%3Adoi%2F10.1371%2Fjournal.pgen.1000167#references (accessed 27 March 2012)
HTA (Human Tissue Authority). 2009. Code of Practice 1 Consent. www.hta.gov.uk/legislationpoliciesandcodesofpractice/codesofpractice/code1consent.cfm (accessed 28 March 2012)
HUGO. 1996. ‘Statement on the principle conduct of genetics research’, Eubios Journal of Asian and International Bioethics 6: 59–60
HUGO. 2000. ‘Ethics committee – statement on benefit sharing’, Eubios Journal of Asian and International Bioethics 10: 70–2
Hunter, K. G. and Laurie, G. 2009. ‘Involving publics in biobank governance: moving beyond existing approaches’ in Widdows, H. and Mullen, C. (eds.) 2009. The Governance of Genetic Information: Who Decides?Cambridge University Press
Hurka, T. 1988Why value autonomy?’, Social Theory and Practice 13: 361–82
Hursthouse, R. 1999. On Virtue Ethics. Oxford University Press
Husted, J. 1997. ‘Autonomy and a right not to know’ in ChadwickR., Levitt, M. and ShickleD. (eds.) The Right to Know and the Right Not to Know. Aldershot: Ashgate pp.55–68
ICGC (International Cancer Gene Consortium). www.icgc.org/ (accessed 27 March 2012)
International Covenant on Civil and Political Rights, G.A. res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 52, U.N. Doc. A/6316 (1966), 999 U.N.T.S. 171, entered into force 23 March 1976. www1.umn.edu/humanrts/instree/b3ccpr.htm (accessed 27 March 2012)
IOM (Institute of Medicine) (USA) Committee for the Study of the Future of Public Health. 1988. The Future of Public Health. Washington, DC: National Academy Press
Jha, V. 2004. ‘Paid transplants in India: the grim reality’, Nephrology Dialysis Transplantation 9: 541–3
Jones, P. 1999a. ‘Human rights, group rights and peoples rights’, Human Rights Quarterly, 21: 80–107
Jones, P. 1999b. ‘Group rights and group oppression’, The Journal of Political Philosophy 7: 353–77
Jones, S. L. and Fallon, L. 2002. ‘Reproductive options for individuals at risk for transmission of a genetic disorder’, Journal of Obstetric, Gynecologic, & Neonatal Nursing 31: 193–9
Juengst, E. T. 1998. ‘Groups as gatekeepers to genomic research: conceptually confusing, morally hazardous, and practically useless’, Kennedy Institute of Ethics Journal 8: 183–200
Juengst, E. T. 2003. ‘Community engagement in genetic research: the “slow code” of research ethics?’ in Knoppers, B. M. (ed.) Population and Genetics: Socio-Legal Perspectives. Boston, MA: Brill
Juengst, E. and Goldenberg, A. 2008. ‘Genetic diagnostic, pedigree and screening research’ in Emanuel, E., Grady, C., Lie, R., Miller, F. and Wendler, D. (eds.). The Oxford Textbook on The Ethics of Clinical Research. Oxford University Press, pp.298–315
Kaye, J. 2006. ‘Do we need a uniform regulatory system for biobanks across Europe?European Journal of Human Genetics 14: 245–8
Kaye, J. 2008. ‘The regulation of direct-to-consumer genetic tests’, Human Molecular Genetics 17: 180–83
Kaye, J. 2011. ‘From single biobanks to international networks: developing e-governance’, Human Genetics 130: 377–82. www.ncbi.nlm.nih.gov/pmc/articles/PMC3155683/pdf/439_2011_Article_1063.pdf (accessed 27 March 2012)
Kaye, J., Boddington, P., de Vries, J., Hawkins, N. and Melham, K. 2010. ‘Ethical implications of the use of whole genome methods in medical research’, European Journal of Human Genetics 18: 398–403
Kaye, J., Heeney, C., Hawkins, J. and Boddington, P. 2009. ‘Data Sharing in genomics – re-shaping scientific practice’, National Review of Genetics 10(5): 331–5. www.ncbi.nlm.nih.gov/pmc/articles/PMC2672783/pdf/ukmss-4610.pdf (accessed 28 March)
Kaye, J. and Martin, P. 2000. ‘Safeguards for research using large scale DNA collections’, British Medical Journal 321: 1146–9
Klitzman, R., Thorne, D., Williamson, J., Chung, W. and Marder, K. 2007. ‘Decision-making about reproductive choices among individuals at-risk for Huntington’s Disease’, Journal of Genetic Counselling 16: 347–62
Knome. www.knome.com/ (accessed 27 March 2012)
Knoppers, B. M. 1997. Human DNA: Law and policy. The Hague: Kluwer Law International
Knoppers, B. M. 1999. ‘Who should have access to genetic information’ in BurleyJ. (ed.) The Genetic Revolution and Human Rights. Oxford University Press
Knoppers, B. M. 2010. ‘Consent to “personal” genomics and privacy’, EMBO Report 11: 416–19
Knoppers, B. M. and Chadwick, R. 2005. ‘Human genetic research: emerging trends in ethics’, Nature 6: 75–9
Koenig, B. A. 2001. ‘Why not grant primacy to the family?’, The American Journal of Bioethics 1: 33–34
Koy, K. 2001. ‘The current privacy environment: implications for third-party research’, The Journal of Continuing Education in the Health Professions 21: 203–14
Krants, I., Sachs, L. and Nilstun, T. 2004. ‘Ethics and vaccination’, Scandinavian Journal of Public Health 32: 172–8
Kymlicka, W. 1988. ‘Liberalism and communitarianism’, Canadian Journal of Philosophy 18: 181–204
Langreth, R. and Waldholz, M. 1999. ‘New era of personalized medicine: targeting drugs for each unique genetic profile’, The Oncologist 4: 426–7
Lapham, E. V., Kozma, C., and Weiss, J. O. 1996. ‘Genetic discrimination: perspectives of consumers’, Science, 274: 621–4
Laurie, G. 2002. Genetic Privacy: A Challenge to Medico-legal Norms. Cambridge University Press
Laurie, G. and Hunter, K. 2004. ‘Benefit sharing and public trust in genetic research’ in Arnason, G., Nordal, S., Arnason, V. (eds.) Blood and Data: Ethical Legal and Social Aspects of Human Genetic Databases. Reykjavik: University of Iceland Press, pp.323–31
Laurie, G., Mallia, P., Frenkel, D. A., Krajewska, A., Moniz, H., Nordal, S., Pitz, C. and Sandor, J. 2010. ‘Managing access to biobanks: how can we reconcile individual privacy and public interests in genetic research?’, Medical Law International 10: 315–37
Law, I. 2011. ‘Respect for autonomy: its demands and limits in biobanking’, HealthCare Analysis 19: 259–68
Law Review. 2004. ‘Icelandic decision of the Supreme Court on the protection of privacy with regard to the processing of health sector databases. Attorney at Law vs The State of Iceland’, Law and the Human Genomic Review 21: 127–38
Lemke, A. A., Wolf, W. A., Hebert-Beirne, J. and Smith, M. E. 2010. ‘Public and biobank participant attitudes toward genetic research participation and data sharing’, Public Health Genomics 13: 368–77
Lenzer, J. and Brownlee, S. 2008. ‘Direct to consumer genetic testing: knowing me, knowing you’, British Medical Journal 336: 858–60
Levitt, M. 2011. ‘Relating to participants: how close do biobanks and donors really want to be?’, Health Care Analysis 19: 220–30
LifeGene (Sweden). http://lifegene.ki.se/ (accessed 27 March 2012)
Lin, Z., Owen, A. B. and Altman, R. B. 2004. ‘Genomic research and human subject privacy’, Science 305: 183
Lipon, P. 2003. ‘Pharmacogenetics: the ethical issues’, The Pharmacogenomics Journal, 14–1
Litman, M. M. 1997. ‘The legal status of genetic material’ in Knoppers, B. M. (ed.) Human DNA: Law and Policy. The Hague: Kluwer Law International, pp.17–20
Locke, J. [1690] 1980. Second Treatise of Government. Macpherson, C. B. (ed.). London: Hackett
Lowrance, W. W. and Collins, F. S. 2007. ‘Identifiability in genomic research’, Science 317: 600–602
Lunshof, J. E., Chadwick, R., Vorhaus, D. B. and Church, G. M. 2008. ‘From genetic privacy to open consent’, Nature Reviews Genetics 9: 406–11
McHale, J. 2006. ‘“Appropriate consent” and the use of human material for research purposes: the competent adult’, Clinical Ethics 1: 195–9
McHale, J. 2011. ‘Accountability, governance and biobanks: the ethics and governance committee as guardian or as toothless tiger’, HealthCare Analysis 19: 207–19
McKellin, W. H. 2001. ‘Clinical ethics and family morality’, The American Journal of Bioethics 1: 31–2
McMichael, A. J. 1993. Planetary Overload: Global Environmental Change and the Health of the Human Species. Cambridge University Press
Mackenzie, C. and Stoljar, N. (eds.) 2000. Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Self. Oxford University Press
Maclean, A. 2009. Autonomy, Informed Consent and Medical Law: A Relational Challenge. Boston, MA: Cambridge University Press
MacIntyre, A. 1984. After Virtue. London: Duckworth
MacIntyre, A. 1999. Dependent Rational Animals: Why Human Beings Need the Virtues. Chicago, IL: Open Court Press
McGuire, A. L. 2008. ‘Identifiability of DNA data: the need for consistent federal policy’, American Journal of Bioethics 8: 75–6
McGuire, A. L. and Gibbs, R. A. 2006. ‘No longer de-identified’, Science 312: 370–1
Manson, N. 2009. ‘The medium and the message: tissue samples, genetic information and data protection legislation’ in Widdows and Mullen (eds.), pp. 15–37
Manson, N. and O’Neill, O. 2007. Rethinking Informed Consent in Bioethics. New York, NY: Cambridge University Press
Marchant, G. E. 2005. ‘Property rights and benefit sharing for DNA donors?’, Jurimetrics 45: 153–78
Marshall, E. 2000. ‘Families sue hospital scientist for control of Canavan gene’, Science 290: 1062
Marshall, E. 2004. ‘Patient advocate named co-inventor on patent for the PXE Disease gene’, Science 27: 1226
Marx, K. and Engels, F. 1999. The German Ideology, C. J. Arthur (ed.), London: Lawrence and Wishart
Maschke, K. J. 2006. ‘Alternative consent approaches for biobank research’, Lancet Oncology 7: 193–4
Matas, A. J. 2006. ‘Why we should develop a regulated system of kidney sales: a call for action!Clinical Journal of the American Society of Nephrology 1: 1129–32
Mauro, F. and Hardison, P. 2000. ‘Traditional knowledge of indigenous and local communities: international debate and policy initiatives’, Ecological Applications 10: 1263–9
Mauron, A. 2008. ‘Introduction: biobanks, genomics, and research – a nightmare for public policy makers?’ in Elger, Biller-Andorno, Mauron and Capron (eds.), pp. 1–9
Mill, J. S. 2008[1859]. On Liberty. Oxford University Press
Miller, D. 2000. Citizenship and National Identity. Cambridge: Polity Press
Mitchell, G. R. and Happe, K. 2001. ‘Informed consent after the human genome project’, Rhetoric and Public Affairs 4: 375–406
Mitchell, J. J., Capua, A., Clow, C. and Scriver, C. R. 1996. ‘Twenty-Year outcome analysis of genetic screening programs for Tay-Sachs and 3-Thalassemia disease carriers in high schools’, American Journal of Human Genetics 59: 793–8
Moellendorf, D. 2002. Cosmopolitan Justice. Cambridge, MA: Westview Press
Moore v. Regents of University of California, 793 P. 2d 479 (Cal. 1990)
Mulhall, S. and Swift. A. 1996. Liberals and Communitarians (2nd edn). Oxford: Blackwell Publishing
Mullan Cook-Deegan, R. 2001. ‘Privacy, families, and human subject protections: some lessons from pedigree research’, The Journal of Continuing Education in the Health Professions 21: 224–37
Murdoch, I. 1970. The Sovereignty of Good. London: Routledge and Kegan Paul
Murdoch, I. 1992. Metaphysics as a Guide to Morals. London: Chatto and Windus
Murdoch, I. 1997 [1957]. ‘Metaphysics and ethics’ in Conradi, P. (ed.), pp. 59–75
Murdoch, I. 1997 [1959]. ‘The sublime and the beautiful revisited’ in Conradi, P. (ed.), pp. 261–86
Murdoch, I. 1997 [1966]. ‘The darkness of practical reason’ in Conradi, P. (ed.), pp. 193–202
Murdoch, I. 1997 [1970]. ‘Existentialists and mystics’ in Conradi, P. (ed.), pp. 221–34
NARC (North American Regional Committee of the Human Genome Diversity Project). 1997. Model Ethical Protocol for Collecting DNA Samples. http://files.campus.edublogs.org/hsblogs.stanford.edu/dist/1/35/files/2011/03/model-ethical-protocol.pdf (accessed 27 March 2012)
Navigenics. www.navigenics.com (accessed 27 March 2012)
NCB (a) (Nuffield Council on Bioethics). ‘The ethics of research related to healthcare in developing countries’. www.nuffieldbioethics.org/sites/default/files/HRRDC_Follow-up_Discussion_Paper.pdf (accessed 27 March 2012)
NCB (b) (Nuffield Council on Bioethics). ‘Human bodies: donation for medicine and research’. www.nuffieldbioethics.org/donation (accessed 27 March 2012)
Netherlands Environmental Assessment Agency. 2006. ‘The effects of climate change in the Netherlands’. www.pbl.nl/en/publications/2006/TheeffectsofclimatechangeintheNetherlands (accessed 27 March 2012)
NewGene. www.newgene.org.uk/ (accessed 27 March 2012)
NHGRI (National Human Genome Research Institute). www.genome.gov/ (accessed 27 March 2011)
NHS Patients’ Rights (UK Citizens’ Advice Website). www.adviceguide.org.uk/index/your_family/health_index_ew/nhs_patients_rights.htm#the_nhs_constitution_for_england (accessed 27 March 2012)
Noddings, N. 1984. Caring, A Feminine Approach to Ethics & Moral Education. Berkeley, CA: University of California Press
Nuremberg Code. 1949. http://ohsr.od.nih.gov/guidelines/nuremberg.html (accessed 27 March 2012)
Nussbaum, M. C. 1999. ‘Virtue ethics: a misleading category’, Journal of Ethics 3: 163–201
Oakley, J. 1996. ‘Varieties of virtue ethics’, Ratio 9: 128–52
OECD. 2009 ‘Guidelines for Human Biobanks and Genetic Research Databases (HBGRDs)’. www.oecd.org/document/12/0,3746,%20en_2649_34537_40302092_1_1_1_1,00.html (accessed March 27 2012)
Offit, P. A. 2011. Deadly Choices: How the Anti-Vaccine Movement Threatens Us All. New York, NY: Basic Books
Offit, K., Sagi, M. and Hurley, K. 2006. ‘Preimplantation genetic diagnosis for cancer syndromes: a new challenge for preventive medicine’, The Journal of the American Medical Association 296: 2727–30
Okin, S. M. 1999. Is Multiculturalism Bad for Women?Princeton, NJ: Princeton University Press
Okin, S. M. 2002. ‘Mistresses of their own destiny: group rights, gender and realistic rights of exit’, Ethics 112: 205–30
O’Neill, O. 2002. Autonomy and Trust in Bioethics. Cambridge University Press
O’Neill, O. 2011. Broadening Bioethics: Clinical Ethics, Public Health and Global Health Nuffield Council on Bioethics Lecture. www.nuffieldbioethics.org/sites/default/files/files/Broadening_bioethics_clinical_ethics_public_health_&global_health.pdf (accessed 27 March 2012)
Oregon State. 2009. ‘Oregon State study says having fewer children is best way to reduce your carbon footprint’. www.oregonlive.com/environment/index.ssf/2009/07/oregon_state_researchers_concl.html (accessed 27 March 2012)
Otten, J., Wyle, J. R. and Phelps, G. D. 2004. ‘The charitable trust as a model for genomic biobanks’, New England Journal of Medicine 350: 85–6
P3G (Public Population Project in Genetics). www.p3g.org/secretariat/index.shtml (accessed 27 March 2012)
Parker, M. 2001. ‘Confidentiality in genetic testing’, American Journal of Bioethics 1: 21–2
Parker, M. and Lucassen, A. M. 2004. ‘Genetic information: a joint account?’, British Medical Journal 329: 165–7
Partridge, E. 1980. Responsibilities to Future Generations: Environmental Ethics. Buffalo, NY: Prometheus Books
Petersen, A. 2005. ‘Securing our genetic health: engendering trust in UK Biobank’, Sociology of Health & Illness 27: 271–92
PropEur (Property Regulation in European Science, Ethics and Law). Project SAS6-CT-2003–510239. Summary abstract. ftp://ftp.cordis.europa.eu/pub/science-society/docs/overview_society_contracts.pdf (accessed 27 March 2012)
Pritchett, L. H. 1994. ‘Desired fertility and the impact of population policies’, Population and Development Review 20: 1–55
Putnam, R. D. 2000. Bowling Alone: The Collapse and Revival of American Community. New York, NY: Simon and Schuster
PXE International. www.pxe.org/what-pxe (accessed 27 March 2012)
Radcliffe-Richards, J., Daar, A. S., Guttmann, R. D., Hoffenberg, R., Kennedy, I., Lock, M., Seils, R. A. and Tilney, N. 1998 [for the International Forum for Transplant Ethics]. ‘The case for allowing kidney sales’, Lancet 351: 1950–52
Radin, M. J. 1996. Contested Commodities: The Trouble with Trade in Sex, Children, Body Parts and Other Things. Cambridge, MA: Harvard University Press
Rapport, F. and Maggs, C. 2002. ‘Titmuss and the gift relationship: altruism revisited’, Journal of Advanced Nursing 40: 495–503
Rawls, J. 1972. A Theory of Justice. Oxford: Clarendon Press
Reiser, S. J. 1995. ‘Creating a medical profession in the United States: the first Code of Ethics of the Americal Medical Association’ in Baker, R. (ed.), The Codification of Medical Morality: Anglo-American Medical Ethics and Medical Jurisprudence in the Nineteenth Century. The Hague: Kluwer, pp.89–104
Roche, P. 1997. ‘Caveat Venditor: protecting privacy and ownership interests in DNA’ in Knoppers, B. M., Laberge, C. and Hirtle, M. (eds.), Human DNA: Law and Policy. The Hague: Kluwer Law International, pp.33–43
Roderick, P. E. 2009. ‘Foreword’ in Burns, W. C. G., Hari, M. and Osofsky, M. (eds.), Adjudicating Climate Change: State, National, and International Approaches. Cambridge University Press
Rothman, D. J. 2002. ‘Ethical and social consequences of selling a kidney’, Journal of the American Medical Association 288: 1640–4
Rothstein, M. A. 2005. ‘Expanding the ethical analysis of biobanks’, Journal of Law, Medicine and Ethics 33: 89–101
Rothstein, M. A. 2010. ‘Is deidentification sufficient to protect health privacy in research?’, American Journal of Bioethics 10: 3–11
RPGEH (Kaiser Permanente Research Program on Genes, Environment, and Health). www.dor.kaiser.org/external/DORExternal/rpgeh/index.aspx (accessed 27 March 2012)
Sandel, M. J. 1984. ‘The procedural republic and the unencumbered self’, Political Theory 12: 81–96
Sandor, P. and Bard, J. (eds.) 2009. The Legal Regulation of Biobanks National Report: Latvia. Budapest: Center for Ethics and Law in Biomedicine (CELAB)
Satz, D. 2010. Why Some Things Should Not be for Sale: The Moral Limits of Markets. New York, NY: Oxford University Press
Savulescu, J. 2003. ‘Is the sale of body parts wrong?’, Journal of Medical Ethics 29: 138–9
Scheffler, S. 1997. ‘Relationships and responsibilities’, Philosophy and Public Affairs 26: 189–209
Scheper-Hughes, N. 2003. ‘Keeping an eye on the global traffic in human organs’, The Lancet 361: 1645–8
Schmidt, H. and Callier, S. 2012. ‘How anonymous is “anonymous”? Some suggestions towards a coherent universal coding system for genetic samples’, Journal of Medical Ethics. http://jme.bmj.com/content/early/2012/02/15/medethics-2011-100181.full.pdf+html (accessed 23 July 2012)
Schover, L. R., Agarwal, A., and Thomas, A. J. Jr. 1998. ‘State of the art: cryopreservation of gametes in young cancer patients’, Journal of Pediatric Hematology/Oncology 20: 426–8
Schrag, B. 2006. ‘Research with groups: group rights, group consent, and collaborative research: commentary on protecting the Navajo People through tribal regulation of research’, Science and Engineering Ethics 12: 511–21
Schroeder, D. and Lasén-Díaz, C. 2007. ‘Benefit sharing: it’s time for a definition’, Journal of Medical Ethics 33: 205–9
Setouhy, M. E., Agbenyega, T., Anto, F., Clerk, C. A., Koram, K. A., English, M., Juma, R., Molyneux, C., Peshu, N., Kumwenda, N., Mfutso-Bengu, J., Molyneux, M., Taylor, T., Aissata Diarra, D., Maiga, S., Sylla, M., Youssouf, D., Olufunke Falade, C., Gbadegesin, S., Lie, R., Mugusi, F., Ngassapa, D., Ecuru, J., Talisuna, A., Emanuel, E., Grady, C., Higgs, E., Plowe, C., Sugarman, J. and Wendler, J. 2004. ‘Moral standards for research in developing countries: from “reasonable availability” to “fair benefits”’, The Hastings Center Report 34: 17–27. www.jstor.org/stable/3528416 (accessed 27 March 2012)
Sharp, R. R. and Foster, M. W. 2000. ‘Involving study populations in genetic research’, Journal of Law and Medical Ethics 28: 41–51
Sheremeta, L. 2003. ‘Population genetic studies: is there an emerging legal obligation to share benefits?’, Health Law Review 12: 36–8
Sheremeta, L. and Knoppers, B. M. 2003. ‘Beyond the rhetoric: population genetics and benefit-sharing’, Health Law Journal 89. http://heinonline.org/HOL/LandingPage?collection=journals&handle=hein.journals/hthlj11&div=7&id=&page= (accessed 27 March 2012)
Shickle, D. 2006. ‘The consent problem within DNA biobanks’, Studies in History and Philosophy of Science 37: 503–19
Shiva, V., 1997. Biopiracy: The plunder of nature and knowledge. Cambridge: South End Press
Shiva, V. 2001. Protect or Plunder? Understanding Intellectual Property. London: Zed Books Ltd.
Shiva, V. 2005. Earth Democracy: Justice Sustainability and Peace. London: Zed Books Ltd.
Silva, V. 2005. ‘In the beginning was the gene: The hegemony of genetic thinking in contemporary culture’, Communication Theory 15: 100–123
Simm, K. 2005. ‘Benefit-sharing: an inquiry regarding the meaning and limits of the concept in human genetic research’, Genomics, Society and Policy 1: 29–40
Simon, J. L. 1990. Population Matters. New Brunswick, NJ: Transaction Publishers
Skolbekken, J. A., Ursin, L. Ø., Solberg, B., Christensen, E., and Borgunn, Y. 2005. ‘Not worth the paper it’s written on? Informed consent and biobank research in a Norwegian context’, Critical Public Health, 15: 335–47
Slote, M. 1983. Goods and Virtues. Oxford: Clarendon Press
Slote, M. 2001. Morals From Motives. Oxford University Press
Smart, A., Martin, P. and Parker, M. 2004. ‘Tailored medicine: whom will it fit? The ethics of patient and disease stratification’, Bioethics, 18: 322–43
Snowdon, C. and Green, J. M. 1997. ‘Preimplantation diagnosis and other reproductive options: attitudes of male and female carriers of recessive disorders’, Human Reproduction 12: 341–50
Steinsbekk, S. K., Ursin, L. Ø., Skolbekken, J. A. and Solberg, B. 2011 ‘We’re not in it for the money – lay people’s moral intuitions on commercial use of “their” biobank medicine’, Health Care and Philosophy, Online First, 26 October 2011
Stirrat, G. M. and Gill, R. J. 2005. ‘Autonomy in medical ethics after O’Neill’, Journal of Medical Ethics 31: 127–30
Stohr, K. 2006. ‘Contemporary virtue ethics’, Philosophy Compass 1: 22–7
Stone, T. H. 2003. ‘The invisible vulnerable: the economically and educationally disadvantaged subjects of clinical research’, Journal of Law, Medicine, & Ethics 31: 149–53
Struewing, J. P., Lerman, C., Kase, R. G., Giambarresi, T. R. and Tucker, M. A. 1995. ‘Anticipated uptake and impact of genetic testing in hereditary breast and ovarian cancer families’, Cancer, Epidemiology, Biomarkers and Prevention 4: 169–73
Swanton, C. 2003. Virtue Ethics: A Pluralistic View. Oxford University Press
Taylor, C. 1989. Sources of the Self. Cambridge, MA: Harvard University Press
Terry, P. B. 2007. ‘Informed consent in clinical medicine’, Chest 131: 563–8
Tiss.EU (Evaluation of Legislation and Related Guidelines on the Procurement, Storage and Transfer of Human Tissues and Cells in the European Union – an Evidence-Based Impact Analysis). www.tisseu.uni-hannover.de/index.php?option=com_content&task=view&id=11&Itemid=17 (accessed 27 March 2012)
Titmuss, R. M. 1971. The Gift Relationship: From Human Blood to Social Policy. New York, NY: Vintage Books
Tong, R. 2001. ‘Towards a feminist global bioethics: addressing women’s health concerns worldwide’, Health Care Analysis 9: 229–46
Tsai, D. 2008. ‘Medicine and society: personhood and autonomy in multicultural health care settings’, American Medical Association Journal of Ethics 10: 171–6
Tutton, R., Kaye, J. and Hoeyer, K. 2004. ‘Governing UK Biobank: the importance of ensuring public trust’, Trends in Biotechnology 22: 284–5
UK10K. www.uk10k.org/ (accessed 27 March 2012)
UK Biobank (a). ‘About UK Biobank’. www.ukbiobank.ac.uk/about-biobank-uk/ (accessed 27 March 2012)
UK Biobank (b). ‘Manchester first for UK Biobank’. www.ukbiobank.ac.uk/wp-content/uploads/2011/07/UK-Biobank-gets-underway-March-2007.pdf (accessed 27 March 2012)
UK Biobank (c). ‘Long-term follow-up of health’. www.ukbiobank.ac.uk/2011/11/following-health (accessed 27 March 2012)
UK Biobank (d). ‘Report and Financial Statements 30 September 2011’. www.ukbiobank.ac.uk/wp-content/uploads/2011/12/UK-Biobank-Limited-Signed-2011-Report-and-Financial-Statements.pdf (accessed 27 March 2012)
UK Biobank (e). ‘Access procedures: application and review procedures for access to the UK Biobank Resource’. www.ukbiobank.ac.uk/wp-content/uploads/2011/11/Access_Procedures_Nov_2011.pdf (accessed 22 March 2011)
UK Biobank (f). www.ukbiobank.ac.uk/ (accessed 27 March 2012)
UK Biobank Ethics and Governance Framework (UKB EGF). 2007. www.ukbiobank.ac.uk/wp-content/uploads/2011/05/EGF20082.pdf (accessed 27 March 2012)
UK Biobank Ethics and Governance Council (a). ‘Public attitudes to third party access and benefit sharing: their application to UK Biobank Final Report 2008’. www.egcukbiobank.org.uk/assets/wtx052208.pdf (accessed 27 March 2012)
UK Biobank Ethics and Governance Council (b). ‘Statement on access’. www.egcukbiobank.org.uk/assets/wtvm054196.pdf (accessed 27 March 2012)
UD Department of Education. 2008. ‘1.5 million homeschooled students in the United States in 2007’. http://nces.ed.gov/pubs2009/2009030.pdf (accessed 27 March 2012)
UN International Covenant on Civil and Political Rights. www.hrweb.org/legal/cpr.html (accessed 20 July 2012)
UNESCO Declaration on Bioethics and Human Rights. 2005. www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/bioethics-and-human-rights/ (accessed 27 March 2012)
UNESCO Declaration on the Human Genome and Human Rights. 2010. http://unesdoc.unesco.org/images/0012/001229/122990eo.pdf (accessed 27 March 2012)
UNESCO International Declaration on Human Genetic Data, 2003. www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/human-genetic-data/ (accessed 27 March 2012)
Van Assche, K., Gutwirth, S., Sterckx, S. Forthcoming. ‘Protecting dignitary interests of biobank research participants: lessons from Havasupai Tribe v. Arizona Board of Regents’, Studies in Ethics, Law and Technology
Waldby, C. and Mitchell, R. 2006. Tissue Economies: Blood, Organs and Cell Lines in Late Capitalism. Durham, NC: Duke University Press
Washington Post. 2006. ‘Panel faults Pfizer in ’96 clinical trial In Nigeria’. www.washingtonpost.com/wp-dyn/content/article/2006/05/06/AR2006050601338.html (accessed 27 March 2012)
Webster, A., Martin, P., Lewis, G. and Smart, A. 2004. ‘Integrating pharmacogenetics into society: in search of a model’, Nature 5: 663–9
Western Australia DNA Bank (WADB). www.wadb.org.au/ (accessed October 2011; currently not accessible)
WHO (a). ‘Definitions of genetics and genomics’. www.who.int/genomics/geneticsVSgenomics/en/ (accessed 27 March 2012)
WHO (b). ‘Report on Infectious diseases 2000: overcoming antimicrobial resistance’. www.who.int/infectious-disease-report/2000/index.html (accessed 27 March 2012)
Weijer, C. and Emanuel, E. J. 2000. ‘Protecting communities in biomedical research’, Science 289: 1142–4
Widdows, H. 2005. The Moral Vision of Iris Murdoch. Aldershot: Ashgate
Widdows, H. 2007. ‘The self in the genetic era’, Health Care Analysis 15: 5–12
Widdows, H. 2009a. ‘Between the individual and the community: The impact of genetics on ethical models’, New Genetics and Society 28: 173–88
Widdows, H. 2009b. ‘Constructing communal models of governance’ in Widdows and Mullen (eds.), pp.75–98
Widdows, H. 2009c. ‘Persons and their parts: new reproductive technologies and risks of commodification’, Health Care Analysis 17: 36–46
Widdows, H. 2009d. ‘Border disputes across bodies: exploitation in trafficking for prostitution and egg sale for stem cell research’, International Journal of the Feminist Association of Bioethics 2: 5–24
Widdows, H. 2011a. ‘Localised past, globalised future: towards an effective bioethical framework using examples from population genetics and medical tourism’, Bioethics 25: 83–91
Widdows, H. 2011b. Global Ethics: An Introduction. Durham, NC: Acumen
Widdows, H. 2012. ‘Global ethics: an overview’ in Chadwick, R. (ed.) Encyclopaedia of Applied Ethics (2nd edn). San Diego, CA: Academic Press, pp.514–22
Widdows, H. Forthcoming. ‘Rejecting the choice paradigm: rethinking the ethical framework in prostitution and egg sale debates’ in Phillips, A., Madhok, S. and Wilson, K.Gender, Agency and Coercion. London: Palgrave
Widdows, H. and Bullock, E. 2011. ‘Reconsidering consent and biobanking’ in Lenk, C. and Hoppe, N. (eds.), Biobanks and Tissue Research. The Public, the Patient and the Regulation, pp. 111–25
Widdows, H. and Cordell, S. 2010. ‘Constructing effective ethical frameworks for biobanking’, Dilemata: International Journal of Applied Ethics 4: 15–31
Widdows, H. and Cordell, S. 2011a. ‘Why communities and their goods matter: illustrated with the example of biobanks’, Public Health Ethics 4: 14–25
Widdows, H. and Cordell, S. 2011b. ‘The ethics of biobanking: key issues and controversies’, Health Care Analysis 19: 207–19
Widdows, H. and Mullen, C. 2009. ‘An investigation of the conception, management and regulation of tangible and intangible property in human tissue: the PropEur Project’ in Stienmann, M., Sykora, P. and Wiesing, U. (eds.) Altruism Reconsidered: Exploring New Approaches to Property in Human Tissue. Aldershot: Ashgate, pp.169–79
Wilkinson, M. and Moore, M. 1997. ‘Inducement in research’, Bioethics 11: 373–89
Wilkinson, S. 2003. Bodies for Sale: Ethics and Exploitation in the Human Body Trade. New York, NY: Routledge
WMA Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects. 2008. www.wma.net/en/30publications/10policies/b3/ (accessed 27 March 2012)
Winickoff, D. E. 2001. ‘Biosamples, genomics and human rights context and content of Iceland’s Biobanks Act’, Journal of Biolaw and Business 4: 11–17
Winickoff, D. E. 2003. ‘Governing population genomics: law, bioethics, and biopolitics in three case studies’, Jurimetrics 43: 187–228
Winickoff, D. E. 2007. ‘Partnership in U.K. Biobank: a third way for genomic property?’, The Journal of Law, Medicine & Ethics 35: 440–56
Winickoff, D. E. and Neumann, L. 2005. ‘Towards a social contract for genomics: property and the public in the “Biotrust” model’, Genomics, Society and Policy 1: 8–21
Winickoff, D. E. and Winickoff, R. N. 2003. ‘The charitable trust as a model for genomic biobanks’, The New England Journal of Medicine 349: 1180–84
Wjst, M. 2010. ‘Caught you: threats to confidentiality due to the public release of large-scale genetic data sets’. www.biomedcentral.com/1472–6939/11/21 (accessed 27 March 2012)
Wolf, S. 1996. Feminism and Bioethics. Beyond Reproduction. New York, NY: Oxford University Press