Pediatric data sharing in genomic research: Attitudes and preferences of parents

Pediatrics

Volumn 133, Issue 4, 2014, Pages 690-697

  Burstein, Matthew D ^a,b   Robinson, Jill Oliver ^c   Hilsenbeck, Susan G ^d   McGuire, Amy L ^c   Lau, Ching C ^d,e  

^a Graduate Program of Structural and Computational Biology and Molecular Biophysics   (United States)

^b Medical Scientist Training Program   (United States)

^c Center for Medical Ethics and Health Policy   (United States)

^d Dan L Duncan Cancer Center   (United States)

^e BAYLOR COLLEGE OF MEDICINE   (United States)

Author keywords

Data sharing; Parents; Participant perspectives; Public release; Restricted release; Tiered consent

Indexed keywords

ACCESS TO INFORMATION; ADULT; AGED; ALTRUISM; ARTICLE; CONTROLLED STUDY; DATA SHARING; FAMILY DECISION MAKING; FEAR; FEMALE; GENETIC DATABASE; GENOMICS; HUMAN; INFORMED CONSENT; MALE; ONLINE SYSTEM; PARENTAL ATTITUDE; PATIENT AUTONOMY; PATIENT INFORMATION; PRIORITY JOURNAL; PRIVACY; SOCIAL DISCRIMINATION; STRUCTURED INTERVIEW;

DATA SHARING; PARENTS; PARTICIPANT PERSPECTIVES; PUBLIC RELEASE; RESTRICTED RELEASE; TIERED CONSENT;

ADOLESCENT; ADULT; AGED; CHILD; FEMALE; GENOMICS; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INFORMATION DISSEMINATION; MALE; MIDDLE AGED; PARENTS; PEDIATRICS; QUESTIONNAIRES; RESEARCH; YOUNG ADULT;

EID: 84898712059     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2013-1592     Document Type: Article

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