An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots. - PubMed - NCBI

An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots. - PubMed - NCBI

J Empir Res Hum Res Ethics. 2017 Oct 1:1556264617736199. doi: 10.1177/1556264617736199. [Epub ahead of print]

An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots.

Rothwell E1, Goldenberg A2, Johnson E1, Riches N1, Tarini B3, Botkin JR1.

Author information

Abstract

As state newborn screening programs develop approaches to parental permission for the storage and use of residual dried newborn screening samples, it is important to understand how the public comprehends the consent elements. Focus groups in Utah, California, and Michigan ( n = 7 groups, 69 participants) were conducted to evaluate the language on a shortened consent form. Outcomes from the analysis included barriers to conceptualizing biospecimen research, the overly cautious tone and awkwardness of the consent form, and perceptions of community versus individual benefit. This research offers insight on public response to, and comprehension of, commonly used consent language for the storage and use of dried blood spot research in a shortened consent form.

KEYWORDS:

biorepositories/biobanks; focus groups; informed consent; newborn screening; public health research

PMID:

 

29073807

 

DOI:

 

10.1177/1556264617736199