Journal
SOCIAL SCIENCE & MEDICINE
Volume 74, Issue 8, Pages 1305-1309Publisher
PERGAMON-ELSEVIER SCIENCE LTD
DOI: 10.1016/j.socscimed.2011.12.047
Keywords
Newborn screening; Focus groups; Public attitudes; Biobank; USA
Funding
- National Human Genome Research Institute [R01HG004970-01]
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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. (C) 2012 Elsevier Ltd. All rights reserved.
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