Not without my Permission: Parents’ Willingness to Permit Use of Newborn Screening Samples for Research

Published online first

Free Abstract Article (Fulltext) Article (PDF 142 KB)

Original Paper

Not without my Permission: Parents' Willingness to Permit Use of Newborn Screening Samples for Research
B.A. Tarini^a, A. Goldenberg^{b, c}, D. Singer^a, S.J. Clark^a, A. Butchart^a, M.M. Davis^{a, d}

^aDivision of General Pediatrics, Child Health Evaluation and Research (CHEAR) Unit, University of Michigan, Ann Arbor, Mich.,
^bDepartment of Bioethics and
^cCenter for Genetic Research Ethics and Law (CGREAL), Case Western Reserve University, Cleveland, Ohio,
^dDivision of General Medicine and Gerald R. Ford School of Public Policy, University of Michigan, Ann Arbor, Mich., USA

Address of Corresponding Author

Public Health Genomics (DOI: 10.1159/000228724)

Key Words

Newborn screening blood spots
Public health
Research

Abstract

Background: State newborn screening (NBS) programs are considering the storage and use of NBS blood samples for research. However, no systematic assessment of parents' attitudes exists. Methods: We conducted an Internet-based survey of a nationally representative parent sample. We examined parents' willingness (1) to permit use of their children's NBS samples for research with/without their permission and (2) to allow NBS sample storage. Using bivariate and multinomial logistic regression, we examined the association of parent and child characteristics with parents' willingness to permit NBS sample storage and use for research, respectively. Results: The response rate was 49.5%. If permission is obtained, 76.2% of parents were 'very or somewhat willing' to permit use of the NBS sample for research. If permission is not obtained, only 28.2% of parents were 'very or somewhat willing'. Of parents surveyed, 78% would permit storage of their children's NBS sample. Parents who refused NBS sample storage were also less willing to permit use of the NBS sample for research. Conclusions: Three-quarters of parents would permit use of their children's NBS samples for research - if their permission is obtained. Parents not in favor of storing NBS samples often opposed the use of NBS samples for research.

Author Contacts

Beth A. Tarini, MD, MS
Assistant Professor of Pediatrics
Child Health Evaluation and Research (CHEAR) Unit, University of Michigan
300 N. Ingalls St., Rm 6C11, Ann Arbor, MI 48109-0456 (USA)
Tel. +1 734 615 8153, Fax +1 734 764 2599, E-Mail btarini@umich.edu

Article Information

The views expressed herein do not necessarily represent the views of the University of Michigan or Case Western Reserve University.

Received: January 5, 2009
Accepted after revision: April 16, 2009
Published online: July 11, 2009
Number of Print Pages : 6
Number of Figures : 3, Number of Tables : 1, Number of References : 18

Medline Abstract (ID 19602864)

Public Health Genomics
is the continuation of
Community Genetics

For non-native English speakers and international authors who would like assistance with their writing before submission, we suggest American Journal Experts for their scientific editing service.