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

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.

► Residual newborn blood samples could serve as a valuable source for biomedical research but public support is essential.
► Results indicate that the US public is supportive of research with residual newborn blood samples when permission is asked.
► A number of concerns were identified that should be addressed for the development of policies for the retention and use of residual newborn samples.