Attitudes of parents of children with serious health conditions regarding residual bloodspot use.
OBJECTIVE
Studies have shown that the general public is supportive of newborn screening (NBS) and supportive of the storage and use of residual bloodspots for quality assurance and biomedical research. However, the attitudes of parents of children with serious health conditions have not been assessed. In this study, we assessed attitudes of parents with children who have phenylketonuria (PKU) and leukemia towards NBS and storage and use of residual bloodspots for research.


METHODS
A total of 49 individuals were recruited and responded to a validated 41-item survey regarding NBS and the retention and use of residual bloodspots. Of these participants, 22 had a child with PKU and 27 had a child with leukemia. We compared their responses to those of 1,927 individuals from the general public obtained in a previous study using the same survey instrument.


CONCLUSIONS
We found that parents of children with a serious health condition had higher levels of support than the general public towards the use of residual NBS samples for research but similar attitudes regarding choice and privacy protections. It is important to assess the attitudes of various stakeholders for policy development.
Graduate Program of Genetic Counseling, University of Utah, Salt Lake City, Utah, USA.
Chinmayee B
CB
Nagaraj
Erin
E
Rothwell
Kimberly
K
Hart
Seth
S
Latimer
Joshua D
JD
Schiffman
Jeffrey R
JR
Botkin
D000328:Adult; D000367:Age Factors; D001294:Attitude to Health; D035843:Biomedical Research / Q000379:methods*; D002648:Child; D003625:Data Collection; D059788:Dried Blood Spot Testing / Q000706:statistics & numerical data*; D005260:Female; D020022:Genetic Predisposition to Disease / Q000235:genetics; D006801:Humans; D007231:Infant, Newborn; D007938:Leukemia / Q000235:genetics; D008297:Male; D008875:Middle Aged; D015997:Neonatal Screening / Q000379:methods* / Q000523:psychology / Q000706:statistics & numerical data*; D010290:Parents / Q000523:psychology*; D010661:Phenylketonurias / Q000175:diagnosis; D018907:Privacy / Q000523:psychology; D011639:Public Opinion; D015203:Reproducibility of Results; D013048:Specimen Handling