| Titre : | Assessing public attitudes on the retention and use of residual newborn screening blood samples : A focus group study. (2012) |
| Auteurs : | Erin ROTHWELL ; Rebecca ANDERSON ; Jeffrey-R BOTKIN ; Matthew BURBANK ; GOLDENBERG (Aaron) : USA. Case Western Reserve University. Cleveland. OH. ; LEWIS (Michelle-H) : USA. John Hopkins University. Baltimore. MD. ; Louisa STARK ; Bob Wong |
| Type de document : | Article |
| Dans : | Social science and medicine (vol. 74, n° 8, 2012) |
| Pagination : | 1305-1309 |
| Langues: | Anglais |
| Mots-clés : | Evaluation ; Attitude ; Utilisation ; Nouveau né ; Dépistage ; Groupe sanguin ; Banque tissu ; Homme ; Amérique ; Amérique du Nord |
| Résumé : | [BDSP. Notice produite par INIST-CNRS R0xA8A9A. Diffusion soumise à autorisation]. 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. |
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