Erratum: Disclosure of incidental findings from next-generation sequencing in pediatric genomic research (Pediatrics (2013) 131:3 (564-571) DOI: 10.1542/peds.2012-0084);Disclosure of incidental findings from next-generation sequencing in pediatric genomic research

Pediatrics

Volumn 131, Issue 3, 2013, Pages 564-571

  Abdul Karim, Ruqayyah ^a   Berkman, Benjamin E ^a,b   Wendler, David ^a   Rid, Annette ^c   Khan, Javed ^d   Badgett, Tom ^e   Hull, Sara Chandros ^a,b  

^a Clinical Center   (United Kingdom)

^b NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

^c KING'S COLLEGE LONDON   (United Kingdom)

^d NATIONAL CANCER INSTITUTE   (United States)

^e UNIVERSITY OF KENTUCKY   (United States)

Author keywords

Ethics; Incidental findings; Pediatrics; Return of results; Whole exome sequencing; Whole genome sequencing

Indexed keywords

ADULTHOOD; ARTICLE; BIOETHICS; CHILD; CHILD HEALTH CARE; CLINICAL PRACTICE; GENETIC PROCEDURES; GENOME ANALYSIS; HUMAN; INCIDENTAL FINDING; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; MEDICAL DECISION MAKING; NEXT GENERATION SEQUENCING; PATIENT COUNSELING; PEDIATRICS; PRIORITY JOURNAL; RESEARCH SUBJECT; RISK BENEFIT ANALYSIS;

EID: 84874599543     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2013-1113     Document Type: Erratum

References (49)

1. Connolly JJ, Hakonarson H. The impact of genomics on pediatric research and medicine. Pediatrics. 2012;129(6):1150-1160
2. Green ED, Guyer MS; National Human Genome Research Institute. Charting a course for genomic medicine from base pairs to bedside. Nature. 2011;470(7333):204-213
3. Kaye J, Boddington P, de Vries J, Hawkins N, Melham K. Ethical implications of the use of whole genome methods in medical research. Eur J Hum Genet. 2010;18(4):398-403
4. Brisson AR, Matsui D, Rieder MJ, Fraser DD. Translational research in pediatrics: tissue sampling and biobanking. Pediatrics. 2012;129(1):153-162
5. Cho MK. Understanding incidental findings in the context of genetics and genomics. J Law Med Ethics. 2008;36(2):280-285, 212
6. Booth TC, Jackson A, Wardlaw JM, Taylor SA, Waldman AD. Incidental findings found in "healthy" volunteers during imaging performed for research: current legal and ethical implications. Br J Radiol. 2010;83(990):456-465
7. Orme NM, Fletcher JG, Siddiki HA, et al. Incidental findings in imaging research: evaluating incidence, benefit, and burden. Arch Intern Med. 2010;170(17):1525-1532
8. Rangel EK. The management of incidental findings in neuro-imaging research: framework and recommendations. J Law Med Ethics. 2010;38(1):117-126
9. Biesecker LG. Exome sequencing makes medical genomics a reality. Nat Genet. 2010;42(1):13-14
10. Couzin-Frankel J. Human genome 10th anniversary. What would you do? Science. 2011;331(6018):662-665
11. Berkman BE. Disclosure of incidental research findings in genomic research-a study of institutional review board chairs' and members' perspectives. Poster presented at: 139th American Public Health Association (APHA) Annual Meeting; October 29-November 2, 2011;Washington, DC
12. Dressler LG, Smolek S, Ponsaran R, et al; GRRIP Consortium. IRB perspectives on the return of individual results from genomic research. Genet Med. 2012;14(2):215-222
13. Hens K, Nys H, Cassiman JJ, Dierickx K. The return of individual research findings in paediatric genetic research. J Med Ethics. 2011;37(3):179-183
14. Tabor HK, Berkman BE, Hull SC, Bamshad MJ. Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research. Am J Med Genet A. 2011;155A(12):2916-2924
15. Knoppers BM. Paediatric research and the communication of not-so incidental findings. Paediatric Child Health Journal. 2012;17(4):190-192
16. Wolf SM, Lawrenz FP, Nelson CA, et al. Managing incidental findings in human subjects research: analysis and recommendations. J Law Med Ethics. 2008;36(2): 219-248, 211
17. Bredenoord AL, Kroes HY, Cuppen E, Parker M, van Delden JJM. Disclosure of individual genetic data to research participants: the debate reconsidered. Trends Genet. 2011;27 (2):41-47
18. Van Ness B. Genomic research and incidental findings. J Law Med Ethics. 2008;36 (2):292-297, 212
19. Pulley J, Clayton EW, Bernard GR, Roden DM, Masys DR. Principles of human subjects protections applied in an opt-out, deidentified biobank. Clin Transl Sci. 2010;3 (1):42-48
20. McGuire AL, Lupski JR. Personal genome research : what should the participant be told? Trends Genet. 2010;26(5):199-201
21. National Bioethics Advisory Commission. Research Involving Human Biological Materials: Ethical Issues and Policy Guidance. Rockville, MD: National Bioethics Advisory Commission; 1999
22. Miller FG, Mello MM, Joffe S. Incidental findings in human subjects research: what do investigators owe research participants? J Law Med Ethics. 2008;36(2):271-279, 211
23. Beskow LM, Burke W. Offering individual genetic research results: context matters. Sci Transl Med. 2010;2(38):38cm20
24. Ravitsky V, Wilfond BS. Disclosing individual genetic results to research participants. Am J Bioeth. 2006;6(6):8-17
25. Fabsitz RR, McGuire A, Sharp RR, et al; National Heart, Lung, and Blood Institute working group. Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group. Circ Cardiovasc Genet. 2010;3(6):574-580
26. Wilfond BS, Carpenter KJ. Incidental findings in pediatric research. J Law Med Ethics. 2008;36(2):332-340, 213
27. Rothstein MA, Pelias MZ. Genetic testing in adoption. The American Society of Human Genetics Social Issues Committee and The American College of Medical Genetics Social, Ethical, and Legal Issues Committee. Am J Hum Genet. 2000;66(3):761-767
28. Committee on Bioethics. Ethical issues with genetic testing in pediatrics. Pediatrics. 2001;107(6):1451-1455
29. Duncan RE, Gillam L, Savulescu J, Williamson R, Rogers JG, Delatycki MB. "Holding your breath": interviews with young people who have undergone predictive genetic testing for Huntington disease. Am J Med Genet A. 2007;143A(17):1984-1989
30. Duncan RE, Gillam L, Savulescu J, Williamson R, Rogers JG, Delatycki MB. "You're one of us now": young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP). Am J Med Genet C Semin Med Genet. 2008;148C(1):47-55
31. Wade CH, Wilfond BS, McBride CM. Effects of genetic risk information on children's psychosocial wellbeing: a systematic review of the literature. Genet Med. 2010;12(6):317-326
32. Greely HT. Genetic testings for cancer: the surgeon's critical role. Ethical and legal issues associated with genetic testing. J Am Coll Surg. 1999;188(1):86-89
33. Borry P, Dierickx K. What are the limits of the duty of care? The case of clinical genetics. Personalized Medicine. 2008;5(2): 101-104
34. Mand C, Gillam L, Delatycki MB, Duncan RE. Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments. J Med Ethics. 2012;38(9):519-524
35. Fernandez CV, Gao J, Strahlendorf C, et al. Providing research results to participants: attitudes and needs of adolescents and parents of children with cancer. J Clin Oncol. 2009;27(6):878-883
36. Hens K, Nys H, Cassiman JJ, Dierickx K. The storage and use of biological tissue samples from minors for research: a focus group study. Public Health Genomics. 2011;14(2):68-76
37. Duncan RE, Savulescu J, Gillam L, Williamson R, Delatycki MB. An international survey of predictive genetic testing in children for adult onset conditions. Genet Med. 2005;7(6): 390-396
38. Pyeritz RE. The coming explosion in genetic testing-is there a duty to recontact? N Engl J Med. 2011;365(15):1367-1369
39. Frantzen C, Links TP, Giles RH. Von Hippel-Lindau Syndrome. Updated: June 21, 2012. In: Pagon RA, Bird TD, Dolan CR, et al., eds. GeneReview. Seattle, WA: University of Washington, Seattle; 1993. Available at: www.ncbi. nlm.nih.gov/books/NBK1463/. Accessed January 8, 2012
40. Meyn MS. Ataxia-telangiectasia, cancer and the pathobiology of the ATM gene. Clin Genet. 1999;55(5):289-304
41. Berg JS, Khoury MJ, Evans JP. Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time. Genet Med. 2011;13(6):499-504
42. Evans JP, Rothschild BB. Return of results: not that complicated? Genet Med. 2012;14 (4):358-360
43. Bradbury AR, Patrick-Miller L, Egleston BL, et al. When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response. Cancer. 2012;118(13):3417-3425
44. Meacham MC, Starks H, Burke W, Edwards K. Researcher perspectives on disclosure of incidental findings in genetic research. J Empir Res Hum Res Ethics. 2010;5(3):31-41
45. White MT, Gamm J. Informed consent for research on stored blood and tissue samples: a survey of institutional review board practices. Account Res. 2002;9(1):1-16
46. Silverman H, Hull SC, Sugarman J. Variability among institutional review boards' decisions within the context of a multicenter trial. Crit Care Med. 2001;29(2): 235-241
47. Green RC, Berg JS, Berry GT, et al. Exploring concordance and discordance for return of incidental findings from clinical sequencing. Genet Med. 2012;14(4):405-410
48. Bledsoe MJ, Clayton EW, McGuire AL, Grizzle WE, O'Rourke PP, Zeps N. Return of research results from genomic biobanks: cost matters [published online ahead of print August 30, 2012]. Genet Med. doi:10.1038/gim.2012.105
49. Gliwa C, Berkman BE. Do researchers have an obligation to actively look for genetic incidental findings? Am J Bioeth. In press.