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The Complexities of Ethical Evaluation of Genomics Research

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References

  • Alpert, S. (1999). Privacy and the analysis of stored tissues.Commissioned paper. In National Bioethics Advisory Commission (NBAC), Vol. II: A1-A32. Rockville, MD: NBAC.

    Google Scholar 

  • Arnason, G., Nordal, S., Arnason, V. (eds) (2004). Blood and data, ethical, legal and social aspects of human genetic databases. Reykjavik: University of Iceland Press &Centre for Ethics.

  • Arnason, V. (2004). Coding and consent: moral challenges of the database project in Iceland. Bioethics 18:27–49.

    Article  Google Scholar 

  • ALRC, Australian Law Reform Commission (2003). Essentially yours: the protection of human genetic information in Australia, 2003. [On-line] Available: http://www.australii.edu.au/au/other/alrc/publications/reports/96 (Accessed May 23, 2004)

  • Beskow, L., Burke, W., Merz, J.F., et al. (2001). Informed consent for population-based research involving genetics. JAMA, 286, 2315–2321.

    Article  Google Scholar 

  • Buchanan, A. (1999). An ethical framework for biological samples policy. Commissioned paper. In National Bioethics Advisory Commission (NBAC), Vol 2.: Research involving human biological materials: Ethical issues and policy guidance (B1–B31) Rockville, MD: NBAC.

    Google Scholar 

  • Chadwick, R. and Berg, K. (2001). Solidarity and equity: new ethical frameworks for genetic databases. Nature, 318, 318–321.

    Google Scholar 

  • Council of Europe. (1997). Explanatory report to the convention on human rights and biomedicine. Strasbourg: Council of Europe.

  • Dute, J. (2003). Toepassing van de genetica in het kader van wetenschappelijk onderzoek. In: ZonMw: Toepassing van de genetica in de gezondheidszorg (pp. 27–50) Den Haag: ZonMw.

    Google Scholar 

  • Eriksson, S. (2004). Should results from genetic research be returned to research subjects and their biological relatives? Trames, 8,(58/53), 1 /2, 3–4, 34–45.

  • European Parliament and the Council. (1995). Directive 95/46/EC on the procession of personal data and on the free movement of such data. Official Journal, L 281:0031–0050.

    Google Scholar 

  • Gulcher, J., Kristjansson, K., Gudbartsson, H., Stefansson, K. (2000). Protection of privacy by third-party encryption in genetic research in Iceland. European Journal of Human Genetics, 8, 739–742.

    Article  Google Scholar 

  • HGC, Human Genetics Commission (2001). Whose hands on your genes. [On-line] Available: http://www.hgc.gov.uk/business_consultations2.htm (Accessed April 4, 2004)

  • Human Genome Organisation (HUGO) Ethics Committee. (1998). Statement on DNA sampling: Control and access. London: HUGO.

    Google Scholar 

  • Kaye, J. (2004). Broad consent – the only option for population genetic databases? In G. Arnason, S. Nordal, and V. Arnason (eds.), Blood and data, ethical, legal and social aspects of human genetic databases (pp. 103–110) Reykjavik: University of Iceland Press &Centre for Ethics.

    Google Scholar 

  • Kaye, J., Helgason, H.H., Nomper, A., et al. (2004). Population genetic databases: A comparative analysis of the law in Iceland, Sweden Estonia and the UK, Trames, 8 (58/53), 1 /2, 3–4:15–33.

    Google Scholar 

  • Krikman, U., Kruuv, K., Herodes, M., et al. (2004). Legal and ethical aspects of the participation of persons with restricted active legal capacity in genome studies. Trames; 8 (58/53), 1 /2, 3–4:63–79.

    Google Scholar 

  • Kristinsson S. (2004). Databases and informed consent: can broad consent legitimate research? In G. Arnason, S. Nordal, V. Arnason (eds.), Blood and data, ethical, legal and social aspects of human genetic databases (pp. 111–120) Reykjavik: University of Iceland Press &Centre for Ethics.

    Google Scholar 

  • Lauri, G. (2001). Genetic privacy: a challenge to medico-legal norms. Cambridge: CUP.

    Google Scholar 

  • Meade T. (2003). The UK Biobank. In Nationaler EthikRat, Tagesdokumentation Biobanken. Jahrestagung des Nationales Ethikrates (pp. 39–49) Hamburg: Druckerei in St Pauli.

  • Medical Research Council (UK). (2001). Human tissue and biological samples for the use in research-operational and ethical guidelines. London: MRC.

    Google Scholar 

  • NBAC, National Bioethics Advisory Commission (1999). Research involving human biological materials: Ethical issues and policy guidance, Vol 1. Rockville, MD: NBAC.

    Google Scholar 

  • Nuffield Council on Bioethics. (2003). Pharmacogenetics: ethical issues. London: Nuffield Council on Bioethics.

    Google Scholar 

  • Nuffield Council on Bioethics (2004). Human Tissue: ethical and legal issues. Response from the Nuffield Council on Bioethics to the Human Tissue Bill. London: Nuffield Council on Bioethics.

    Google Scholar 

  • Nys, H., Dreesen, I., Vinck, I., et al. (2002). Genetic testing; patients ’ rights, insurance and employment. A survey of regulations in the European Union. Brussels: European Commission, Directorate-General for Research, Quality of Life and Management of Living resources.

    Google Scholar 

  • O ’Neill O. (2003). Some limits of informed consent. Journal of Medical Ethics, 29, 4–7.

    Google Scholar 

  • Ploem, M. (2002). Wetenschapbeoefening en belemmerende privacywetgeving: de wetgever in balans? ITeR-reeks 51. Den Haag: SDU uitgevers.

    Google Scholar 

  • Prentice, E.D., and Gordon, B.G. (2005). Institutional Review Board assessment of risks and benefits associated with research. [On-line] Available: http://onlineethics.org/reseth/nbac/hprentice.html (Accessed January 10, 2005).

  • Schmidt, M.K., van Leeuwen, F.E., Klaren, H.M., et al. (2004). Genetisch onderzoek met opgeslagen lichaamsmateriaal: een coderingsprocedure met optimaal gebruik van informatie bij behoud van privacy. Nederlands Tijdschrift voor Geneeskunde, 148, 564–568.

    Google Scholar 

  • Schneider, I. (2003). Biobanken: Körpermaterial und gendaten im Spannungsfeld von Gemeinwohl und privater Aneignung. In Nationaler EthikRat, Tagesdokumentation Biobanken.Jahrestagung des Nationales Ethikrates (pp. 65–81) Hamburg: Druckerei in St Pauli.

    Google Scholar 

  • Thorgeirsdottir, S. (2004). The controversy on consent in the Icelandic database case and narrow bioethics. In G. Arnason, S. Nordal, and V. Arnason (eds). Blood and data, ethical, legal and social aspects of human genetic databases, Reykjavik: University of Iceland Press &Centre for Ethics.

    Google Scholar 

  • Trouet, C. (2003). Van lichaam naar lichaamsmateriaal. Recht en het nader gebruik van cellen en weefsels, Antwerpen: Intersentia.

    Google Scholar 

  • Weir, R.F. (1999). The ongoing debate about stored issue samples, research and informed consent. Commissioned paper. In National Bioethics Advisory Commission (NBAC), Vol II. Rockville, MD: NBAC.

    Google Scholar 

  • World Health Organization (WHO). (1998). Proposed international guidelines on ethical issues in medical genetics and genetic services. Law and the Human Genome Review, 9, 239–251.

    Google Scholar 

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Authors and Affiliations

  1. Department of Ethics, Philosophy and History of Medicine, Radboud University Nijmegen Medical Centre, P.O. Box 9101, 6500 HB, Nijmegen, Netherlands

    R. Hoedemaekers Ph.D.

  2. Department of Ethics, Philosophy and History of Medicine, Radboud University Nijmegen Medical Centre, Nijmegen

    B. Gordijn Ph.D. (Pharm D)

  3. Department of Clinical Pharmacy, Nijmegen Medical Centre, Radboud University, Nijmegen

    Y. Hekster Pharm D, Ph.D.

  4. Department of Ethics, Philosophy and History of Medicine, Chair National Association of Regional Research Ethics Committees, Radboud University Nijmegen Medical Centre, Nijmegen

    F. Van Agt MA. LL.M

Authors
  1. R. Hoedemaekers Ph.D.
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  2. B. Gordijn Ph.D.
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  3. Y. Hekster Pharm D, Ph.D.
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  4. F. Van Agt MA. LL.M
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Correspondence to R. Hoedemaekers Ph.D..

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Hoedemaekers, R., Gordijn, B., Hekster, Y. et al. The Complexities of Ethical Evaluation of Genomics Research. HEC Forum 18, 18–36 (2006). https://doi.org/10.1007/s10730-006-7985-6

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