Do research participants share genomic screening results with family members?

Author:

Wynn Julia1,Milo Rasouly Hila2,Vasquez‐Loarte Tania2,Saami Akilan M.13,Weiss Robyn2,Ziniel Sonja I.4,Appelbaum Paul S.5,Wright Clayton Ellen6,Christensen Kurt D.78,Fasel David9,Green Robert C.1011,Hain Heather S.12,Harr Margaret12,Hoell Christin13,Kullo Iftikhar J14,Leppig Kathleen A.15,Myers Melanie F.16,Pacyna Joel E.17,Perez Emma F.11,Prows Cynthia A.16,Kulchak Rahm Alanna18,Campbell‐Salome Gemme18,Sharp Richard R.17,Smith Maureen E13,Wiesner Georgia L.19,Williams Janet L.18,Blout Zawatsky Carrie L.11,Gharavi Ali G.2,Chung Wendy K.12,Holm Ingrid A.2021

Affiliation:

1. Department of Pediatrics Columbia University Irving Medical Center New York NY USA

2. Department of Medicine Columbia University Irving Medical Center New York NY USA

3. Department of Epidemiology Columbia University Mailman School of Public Health New York NY USA

4. Department of Pediatrics School of Medicine University of Colorado Aurora CO USA

5. Department of Psychiatry Center for Research on Ethical Legal & Social Implications of Psychiatric Neurologic & Behavior Genetics Columbia University Irving Medical Center New York NY USA

6. Center for Biomedical Ethics and Society and Department of Pediatrics Vanderbilt University Medical Center Nashville TN USA

7. Department of Population Medicine Precision Medicine Translational Research (PROMoTeR) Center Harvard Pilgrim Health Care Institute Boston MA USA

8. Department of Population Medicine Harvard Medical School Boston MA USA

9. Department of Biomedical Informatics Columbia University Irving Medical Center New York NY USA

10. Broad Institute of MIT and Harvard Cambridge MA USA

11. Division of Genetics Department of Medicine Brigham and Women’s Hospital Boston MA USA

12. Center for Applied Genomics Children's Hospital of Philadelphia Philadelphia PA USA

13. Center for Genetic Medicine Northwestern University Chicago IL USA

14. Department of Cardiovascular Medicine Mayo Clinic Rochester MN USA

15. Genetic Services and Kaiser Permanente Washington Health Research Institute Kaiser Permanente of Washington Seattle WA USA

16. Divisions of Human Genetics and Patient Services Children’s Hospital Medical Center Cincinnati OH USA

17. Biomedical Ethics Program Mayo Clinic Rochester MN USA

18. Genomic Medicine Institute Geisinger Danville PA USA

19. Division of Genetic Medicine Department of Medicine, and Vanderbilt‐Ingram Cancer Center Vanderbilt University Medical Center Nashville TN USA

20. Division of Genetics and Genomics and the Manton Center for Orphan Diseases Research Boston Children’s Hospital Boston MA USA

21. Department of Pediatrics Harvard Medical School Boston MA USA

Funder

Brigham and Women's Hospital

Cincinnati Children's Hospital Medical Center

Mayo Clinic

Children's Hospital of Philadelphia

Northwestern University

Publisher

Wiley

Subject

Genetics (clinical)

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