Parents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey

Author:

Antommaria Armand H. Matheny12ORCID,Brothers Kyle B.3ORCID,Myers John A.3,Feygin Yana B.3,Aufox Sharon A.4ORCID,Brilliant Murray H.5ORCID,Conway Pat6ORCID,Fullerton Stephanie M.7ORCID,Garrison Nanibaa’ A.89ORCID,Horowitz Carol R.10,Jarvik Gail P.11ORCID,Li Rongling12,Ludman Evette J.13,McCarty Catherine A.14ORCID,McCormick Jennifer B.15ORCID,Mercaldo Nathaniel D.16ORCID,Myers Melanie F.217ORCID,Sanderson Saskia C.18,Shrubsole Martha J.19ORCID,Schildcrout Jonathan S.16ORCID,Williams Janet L.20ORCID,Smith Maureen E.4ORCID,Clayton Ellen Wright21ORCID,Holm Ingrid A.2223ORCID

Affiliation:

1. Ethics Center, Cincinnati Children’s Hospital Medical Center;

2. Department of Pediatrics, University of Cincinnati College of Medicine;

3. Department of Pediatrics, University of Louisville;

4. Center for Genetic Medicine, Northwestern University;

5. Center for Human Genetics, Marshfield Clinic Research Institute;

6. Essentia Institute of Rural Health;

7. Department of Bioethics and Humanities, University of Washington;

8. Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Hospital and Research Institute;

9. Department of Pediatrics (Bioethics), University of Washington;

10. Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai;

11. Departments of Medicine (Medical Genetics) and Genome Sciences, University of Washington;

12. Division of Genomic Medicine, National Human Genome Research Institute;

13. Kaiser Permanente Washington Health Research Institute;

14. University of Minnesota Medical School;

15. Biomedical Ethics Program, Mayo Clinic;

16. Department of Biostatistics, Vanderbilt University;

17. Division of Human Genetics, Cincinnati Children’s Hospital Medical Center;

18. Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai;

19. Vanderbilt Epidemiology Center, Vanderbilt University Medical Center;

20. Genomic Medicine Institute, Geisinger;

21. Center for Biomedical Ethics and Society, Vanderbilt University Medical Center;

22. Division of Genetics and Genomics and the Manton Center for Orphan Diseases Research, Boston Children’s Hospital;

23. Department of Pediatrics, Harvard Medical School

Funder

The Consent, Education, Regulation and Consultation

National Human Genome Research Institute

National Institutes of Health

Cincinnati Children’s Hospital Medical Center/Boston Children’s Hospital

Children’s Hospital of Philadelphia

Essentia Institute of Rural Health, Marshfield Clinic Research Foundation, and Pennsylvania State University

Geisinger Clinic

Kaiser Permanente/University of Washington

Mayo Clinic

Icahn School of Medicine at Mount Sinai

Northwestern University

Vanderbilt University Medical Center

Publisher

Informa UK Limited

Subject

Health Policy,Philosophy,Health(social science)

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