Wolf SM. Return of individual research results and incidental findings: facing the challenges of translational science. Annu Rev Genomics Hum Genet. 2013;14:557–77.
Ottman R, Freyer C, Mefford HC, Poduri A, Lowenstein DH, Epilepsy Return of Results Workshop Participants. Return of individual results in epilepsy genomic research: A view from the field. Epilepsia. 2018;59(9):1635-42.
Knoppers BM, Deschenes M, Zawati MH, Tasse AM. Population studies: Return of research results and incidental findings policy statement. Eur J Hum Genet. 2013;21(3):245–7.
Jarvik GP, Amendola LM, Berg JS, Brothers K, Clayton EW, Chung W, et al. Return of genomic results to research participants: the floor, the ceiling, and the choices in between. Am J Hum Genet. 2014;94(6):818–26.
National Heart Lung Blood institute working group, Fabsitz RR, McGuire a, sharp RR, Puggal M, et al. 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):574–80.
Downey AS, Busta ER, Mancher M, Botkin JR, editors. Returning Individual Research Results to Participants: Guidance for a New Research Paradigm. Washington (DC)2018.
Avard D, Senecal K, Madadi P, Sinnett D. Pediatric research and the return of individual research results. J Law Med Ethics. 2011;39(4):593–604.
Senecal K, Rahimzadeh V, Knoppers BM, Fernandez CV, Avard D, Sinnett D. Statement of principles on the return of research results and incidental findings in paediatric research: a multi-site consultative process. Genome. 2015;58(12):541–8.
Knoppers BM, Avard D, Senecal K, Zawati MH, Members PGIPP. Return of whole-genome sequencing results in paediatric research: a statement of the P3G international paediatrics platform. Eur J Hum Genet. 2014;22(1):3–5.
Wolf SM, Crock BN, Van Ness B, Lawrenz F, Kahn JP, Beskow LM, et al. Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genet Med. 2012;14(4):361–84.
Dressler LG, Smolek S, Ponsaran R, Markey JM, Starks H, Gerson N, et al. IRB perspectives on the return of individual results from genomic research. Genet Med. 2012;14(2):215–22.
Beskow LM, O'Rourke PP. Return of genetic research results to participants and families: IRB perspectives and roles. J Law Med Ethics. 2015;43(3):502–13.
TCPS2 - Chapter 13. Human Genetic Research 2014. Available from: http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/chapter13-chapitre13/. Accessed 26 March 2019.
Thorogood A, Dalpe G, Knoppers BM. Return of individual genomic research results: are laws and policies keeping step? Eur J Hum Genet. 2019;27(4):535–46.
Black L, Avard D, Zawati MH, Knoppers BM, Hebert J, Sauvageau G, et al. Funding considerations for the disclosure of genetic incidental findings in biobank research. Clin Genet. 2013;84(5):397–406.
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.
Fernandez CV, Skedgel C, Weijer C. Considerations and costs of disclosing study findings to research participants. CMAJ. 2004;170(9):1417–9.
Green RC, Berg JS, Grody WW, Kalia SS, Korf BR, Martin CL, et al. ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genet Med. 2013;15(7):565–74.
Kalia SS, Adelman K, Bale SJ, Chung WK, Eng C, Evans JP, et al. Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): a policy statement of the American College of Medical Genetics and Genomics. Genet Med. 2017;19(2):249–55.
Webber EM, Hunter JE, Biesecker LG, Buchanan AH, Clarke EV, Currey E, et al. Evidence-based assessments of clinical actionability in the context of secondary findings: updates from ClinGen's Actionability working group. Hum Mutat. 2018;39(11):1677–85.
Dorschner MO, Amendola LM, Turner EH, Robertson PD, Shirts BH, Gallego CJ, et al. Actionable, pathogenic incidental findings in 1,000 participants' exomes. Am J Hum Genet. 2013;93(4):631–40.
Amendola LM, Dorschner MO, Robertson PD, Salama JS, Hart R, Shirts BH, et al. Actionable exomic incidental findings in 6503 participants: challenges of variant classification. Genome Res. 2015;25(3):305–15.
Schwartz MLB, McCormick CZ, Lazzeri AL, Lindbuchler DM, Hallquist MLG, Manickam K, et al. A model for genome-first care: returning secondary genomic findings to participants and their healthcare providers in a large research cohort. Am J Hum Genet. 2018;103(3):328–37.
Hart MR, Biesecker BB, Blout CL, Christensen KD, Amendola LM, Bergstrom KL, et al. Secondary findings from clinical genomic sequencing: prevalence, patient perspectives, family history assessment, and health-care costs from a multisite study. Genet Med. 2018.
Fung A, Manlhiot C, Naik S, Rosenberg H, Smythe J, Lougheed J, et al. Impact of prenatal risk factors on congenital heart disease in the current era. J Am Heart Assoc. 2013;2(3):e000064.
Papaz T, Safi M, Manickaraj AK, Ogaki C, Breaton Kyryliuk J, Burrill L, et al. Factors influencing participation in a population-based biorepository for childhood heart disease. Pediatrics. 2012;130(5):e1198–205.
Reuter MS, Walker S, Thiruvahindrapuram B, Whitney J, Cohn I, Sondheimer N, et al. The personal genome project Canada: findings from whole genome sequences of the inaugural 56 participants. CMAJ. 2018;190(5):E126–E36.
Szego MJ, Meyn MS, Shuman C, Zlotnik Shaul R, Anderson JA, Bowdin S, et al. Views from the clinic: healthcare provider perspectives on whole genome sequencing in paediatrics. Eur J Med Genet. 2018.
Richards S, Aziz N, Bale S, Bick D, Das S, Gastier-Foster J, et al. Standards and guidelines for the interpretation of sequence variants: a joint consensus recommendation of the American College of Medical Genetics and Genomics and the Association for Molecular Pathology. Genet Med. 2015;17(5):405–24.
Kearney HM, Thorland EC, Brown KK, Quintero-Rivera F, South ST, Working Group of the American College of Medical Genetics Laboratory Quality Assurance Committee. American College of Medical Genetics standards and guidelines for interpretation and reporting of postnatal constitutional copy number variants. Genet Med. 2011;13(7):680-5.
Botkin JR. Ethical issues in pediatric genetic testing and screening. Curr Opin Pediatr. 2016;28(6):700–4.
Ross LF, Saal HM, David KL, Anderson RR, American Academy of Pediatrics, American College of Medical Genetics, et al. Technical report: Ethical and policy issues in genetic testing and screening of children. Genet Med. 2013;15(3):234-45.
Christensen KD, Vassy JL, Jamal L, Lehmann LS, Slashinski MJ, Perry DL, et al. Are physicians prepared for whole genome sequencing? A qualitative analysis. Clin Genet. 2016;89(2):228–34.
Fernandez CV, Strahlendorf C, Avard D, Knoppers BM, O'Connell C, Bouffet E, et al. Attitudes of Canadian researchers toward the return to participants of incidental and targeted genomic findings obtained in a pediatric research setting. Genet Med. 2013;15(7):558–64.
Kleiderman E, Knoppers BM, Fernandez CV, Boycott KM, Ouellette G, Wong-Rieger D, et al. Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases. J Med Ethics. 2014;40(10):691–6.
Ramoni RB, McGuire AL, Robinson JO, Morley DS, Plon SE, Joffe S. Experiences and attitudes of genome investigators regarding return of individual genetic test results. Genet Med. 2013;15(11):882–7.
Fernandez CV, O'Rourke PP, Beskow LM. Canadian research ethics board leadership attitudes to the return of genetic research results to individuals and their families. J Law Med Ethics. 2015;43(3):514–22.
Mital S, Musunuru K, Garg V, Russell MW, Lanfear DE, Gupta RM, et al. Enhancing literacy in cardiovascular genetics: a scientific statement from the American Heart Association. Circ Cardiovasc Genet. 2016;9(5):448–67.
Yu JH, Jamal SM, Tabor HK, Bamshad MJ. Self-guided management of exome and whole-genome sequencing results: changing the results return model. Genet Med. 2013;15(9):684–90.
Kohane IS, Mandl KD, Taylor PL, Holm IA, Nigrin DJ, Kunkel LM. Medicine. Reestablishing the researcher-patient compact. Science. 2007;316(5826):836–7.
Bledsoe MJ, Clayton EW, McGuire AL, Grizzle WE, O'Rourke PP, Zeps N. Return of research results from genomic biobanks: cost matters. Genet Med. 2013;15(2):103–5.
Dresser R. Public preferences and the challenge to genetic research policy. J Law Biosci. 2014;1(1):52–67.