IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v74y2012i8p1305-1309.html
   My bibliography  Save this article

Assessing public attitudes on the retention and use of residual newborn screening blood samples: A focus group study

Author

Listed:
  • Rothwell, Erin
  • Anderson, Rebecca
  • Goldenberg, Aaron
  • Lewis, Michelle H.
  • Stark, Louisa
  • Burbank, Matthew
  • Wong, Bob
  • Botkin, Jeffrey R.

Abstract

This paper discusses attitudes and opinions of a diverse group of participants toward the retention and use of residual newborn blood samples for research. Data were drawn from focus groups based in six states in the USA, and results provide support for the retention and use of residual newborn blood samples for research when parental permission is asked beforehand. However, there were a number of concerns that also warrant attention for the development of policy and maintaining trust with the public, such as timing of permission, use of samples already stored, level of personal control of sample use and education. The results demonstrate the complexity of the topic and the ethical ambiguities associated with the retention and use of residual newborn blood samples.

Suggested Citation

  • Rothwell, Erin & Anderson, Rebecca & Goldenberg, Aaron & Lewis, Michelle H. & Stark, Louisa & Burbank, Matthew & Wong, Bob & Botkin, Jeffrey R., 2012. "Assessing public attitudes on the retention and use of residual newborn screening blood samples: A focus group study," Social Science & Medicine, Elsevier, vol. 74(8), pages 1305-1309.
    • Handle: RePEc:eee:socmed:v:74:y:2012:i:8:p:1305-1309
    DOI: 10.1016/j.socscimed.2011.12.047
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953612001050
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2011.12.047?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Murphy, J. & Scott, J. & Kaufman, D. & Geller, G. & LeRoy, L. & Hudson, K., 2009. "Public perspectives on informed consent for biobanking," American Journal of Public Health, American Public Health Association, vol. 99(12), pages 2128-2134.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Jonas Lander & Tobias Hainz & Irene Hirschberg & Daniel Strech, 2014. "Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-17, December.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Timothy Caulfield & Blake Murdoch, 2017. "Genes, cells, and biobanks: Yes, there’s still a consent problem," PLOS Biology, Public Library of Science, vol. 15(7), pages 1-9, July.
    2. Jonas Lander & Tobias Hainz & Irene Hirschberg & Daniel Strech, 2014. "Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-17, December.
    3. Sandra Millon Underwood & Aaron G. Buseh & Sheryl T. Kelber & Patricia E. Stevens & Leolia Townsend, 2013. "Enhancing the Participation of African Americans in Health-Related Genetic Research: Findings of a Collaborative Academic and Community-Based Research Study," Nursing Research and Practice, Hindawi, vol. 2013, pages 1-9, December.
    4. Melanie Goisauf & Gillian Martin & Heidi Beate Bentzen & Isabelle Budin-Ljøsne & Lars Ursin & Anna Durnová & Liis Leitsalu & Katharine Smith & Sara Casati & Marialuisa Lavitrano & Deborah Mascalzoni &, 2019. "Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research," PLOS ONE, Public Library of Science, vol. 14(9), pages 1-22, September.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:74:y:2012:i:8:p:1305-1309. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.