Skip to main content

Information Rights on the Edge of Ignorance

  • Chapter
The Ethics of Research Biobanking
  • 1079 Accesses

Abstract

In this chapter I discuss whether there is such a thing as a right to information in biobank research. The concept of “information” is discussed and different theories about what it means to have the right to information are presented. The way in which the right to information may influence moral problems connected to epidemiological biobank research is also discussed.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 169.00
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 219.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 219.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  • Allen AL (1997) Genetic Privacy: Emerging Concepts and Values. In: Rothstein M (Ed.) Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. Yale University Press, New Haven, pp 31–59

    Google Scholar 

  • Almond B (1991) Rights. In: Singer PA (Ed.) Companion to Ethics. Blackwell, Oxford, pp 259– 269

    Google Scholar 

  • Harris J and Keywood K (2001) Ignorance, information and autonomy. Theoretical Medicine and Bioethics 22:415–436

    Article  PubMed  CAS  Google Scholar 

  • Häyry M (1994) Liberal Utilitarianism and Applied Ethics. Routledge, London

    Google Scholar 

  • Hä yry M and Takala T (2001) Genetic information, rights, and autonomy. Theoretical Medicine and Bioethics 22:403–414

    Article  Google Scholar 

  • Hohfeld W (1917) Fundamental legal conceptions as applied in judicial reasoning. Yale Law Journal 26:710–771

    Article  Google Scholar 

  • McGleenan T (1997) Rights to know and not to know: Is there a need for a genetic privacy law? In: Chadwick R, Levitt M, Shickle D (Eds.) The Right to Know and the Right not to Know. Ashgate, Aldershot, pp 43–54

    Google Scholar 

  • Norway (1999) The Act of 2 July 1999, No. 63 relating to Patients’ Rights

    Google Scholar 

  • Norway (2000) The Act of 14 April 2000, No. 31 relating to the processing of personal data

    Google Scholar 

  • Norway (2001) The Act of 18 May 2001, No. 24 on Personal Health Data Filing Systems and the Processing of Personal Health Data

    Google Scholar 

  • Norway (2003) The Act of 21 February 2003, No.12 relating to Biobanks

    Google Scholar 

  • Sumner LW (1987) The Moral Foundation of Rights. Clarendon, Oxford

    Google Scholar 

  • Waismann F (1946) The many-level-structure of language. Synthese 5:221–229

    Article  Google Scholar 

  • World Medical Association (WMA) (2004) The Declaration of Helsinki

    Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2009 Springer Science + Business Media, LLC

About this chapter

Cite this chapter

Skrikerud, A.M. (2009). Information Rights on the Edge of Ignorance. In: Solbakk, J., Holm, S., Hofmann, B. (eds) The Ethics of Research Biobanking. Springer, Boston, MA. https://doi.org/10.1007/978-0-387-93872-1_4

Download citation

  • DOI: https://doi.org/10.1007/978-0-387-93872-1_4

  • Publisher Name: Springer, Boston, MA

  • Print ISBN: 978-0-387-93871-4

  • Online ISBN: 978-0-387-93872-1

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics