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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
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    References listed on IDEAS

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    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.
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    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.

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