Parents' decision-making in newborn screening: opinions, choices, and information needs.
OBJECTIVE
Our objective was to describe how parents consider disease and test characteristics when making decisions about newborn screening.


METHODS
We conducted focus groups with parents from primary care clinics and interviews of parents from a genetics clinic (total of 45 participants). Participants discussed 7 vignettes about newborn screening that we developed and refined with the assistance of an expert panel. Two coders coded the data independently, compared coding, and resolved disagreements through discussion. Using framework analysis, we analyzed the data and identified how parents' preferences varied according to disease characteristics, test characteristics, and perceptions of the associated risks and benefits.


RESULTS
Study participants strongly supported population-wide screening for disorders with well-defined, effective treatments, even if the treatment (eg, a bone marrow transplant) had significant morbidity. However, particularly among primary care clinic participants, there were more-varied preferences and greater difficulty making decisions about disorders associated with older age at onset, less-accurate screening tests, or less-effective treatment. In those cases, many participants suggested optional screening. For all disorders, participants expressed a desire for more information to facilitate decision-making.


CONCLUSIONS
Participants supported newborn screening for treatable disorders but suggested optional screening for other disorders. The variable influences on parents' decision-making suggest that parents with diverse experiences, if they were included in decision-making regarding screening policies, could provide critical perspectives and help screening programs address parents' preferences and meet parents' information needs.
Lipstein
Ellen A
EA
Center for Innovation in Chronic Disease Care, Cincinnati Children's Hospital Medical Center and College of Medicine, University of Cincinati, MLC 7027, 3333 Burnet Ave, Cincinnati, OH 45229, USA. ellen.lipstein@cchmc.org
Nabi
Emara
E
Perrin
James M
JM
Luff
Donna
D
Browning
Marsha F
MF
Kuhlthau
Karen A
KA
D017668:Age of Onset; D001290:Attitude; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D005820:Genetic Testing / Q000523:psychology; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D018580:Mandatory Testing; D015997:Neonatal Screening / Q000009:adverse effects / Q000523:psychology*; D010290:Parents / Q000193:education / Q000523:psychology*; D012307:Risk Factors