Show simple item record

dc.creatorFeuchtbaum, Lisaen
dc.creatorCunningham, Georgeen
dc.creatorSciortino, Stanen
dc.date.accessioned2011-07-12T18:20:51Zen
dc.date.available2011-07-12T18:20:51Zen
dc.date.created2007-09en
dc.date.issued2007-09en
dc.identifier.bibliographicCitationJournal of Empirical Research on Human Research Ethics 2007 September; 2(3): 3-14en
dc.identifier.urihttp://hdl.handle.net/10822/511462en
dc.description.abstractCalifornia provides mandatory newborn screening for disorders that cause irreversible, severe disabilities if not identified and treated early in life. Parental consent is not required. In 2001, the Genetic Disease Branch was mandated to pilot test a new technology that could identify many additional disorders using the same blood specimen already collected. Study participation required informed consent, which was obtained for 47% of births during the study timeframe. The inability of hospitals to carry out the consent procedure for all newborns resulted in denial of testing and missed cases. If informed consent were waived, all newborns could have been tested. Several empirical questions are posed and each is examined from the perspective of society, the parents and the newborn. It is concluded that the legitimate needs of society and the interests of newborns should not be sacrificed to respond to the autonomy interests of the few parents who did not wish their infant to participate in the study, and that in the future, parental consent should be waived for projects evaluating new screening technologies.en
dc.formatArticleen
dc.languageengen
dc.source308976en
dc.subjectAutonomyen
dc.subjectBlooden
dc.subjectConsenten
dc.subjectDiseaseen
dc.subjectHospitalsen
dc.subjectInformed Consenten
dc.subjectLifeen
dc.subjectNewbornsen
dc.subjectParental Consenten
dc.subjectParentsen
dc.subjectResearchen
dc.subjectTechnologyen
dc.subject.classificationGenetics, Molecular Biology and Microbiologyen
dc.subject.classificationGenetic Screening / Genetic Testingen
dc.subject.classificationInformed Consent or Human Experimentationen
dc.subject.classificationSocial Control of Human Experimentationen
dc.subject.classificationResearch on Newborns and Minorsen
dc.subject.classificationMinors / Parental Consenten
dc.titleQuestioning the need for informed consent: a case study of California's experience with a pilot newborn screening research projecten
dc.provenanceDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National Human Genome Research Instituteen
dc.provenanceDigital citation migrated from OpenText Livelink Discovery Server database named GenETHX to DSpace collection GenETHX hosted by Georgetown Universityen


This item appears in the following Collection(s)

Show simple item record


Georgetown University Seal
©2009—2022 Bioethics Research Library
Box 571212 Washington DC 20057-1212
202.687.3885