One thing leads to another: The cascade of obligations when researchers report genetic research results to study participants

European Journal of Human Genetics

Volumn 20, Issue 8, 2012, Pages 837-843

  Miller, Fiona Alice ^a,b   Hayeems, Robin Zoe ^a   Li, Li ^a   Bytautas, Jessica Peace ^a  

^a UNIVERSITY OF TORONTO   (Canada)

^b UNIVERSITY OF TORONTO   (Canada)

Author keywords

autism; communicating research results; cystic fibrosis; research ethics

Indexed keywords

ACCESS TO INFORMATION; ARTICLE; ATTITUDE; AUTISM; CYSTIC FIBROSIS; HEALTH CARE ACCESS; HUMAN; INTERPERSONAL COMMUNICATION; LIKERT SCALE; MEDICAL RESEARCH; PATIENT CARE; PERCEPTION; PRIORITY JOURNAL; RATING SCALE;

ATTITUDE OF HEALTH PERSONNEL; CYSTIC FIBROSIS; FEMALE; GENETIC RESEARCH; HUMANS; MALE; MORAL OBLIGATIONS; QUESTIONNAIRES; RESEARCH PERSONNEL; RESEARCH REPORT; SOCIAL PERCEPTION; TRUTH DISCLOSURE;

EID: 84864133229     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2012.24     Document Type: Article

References (30)

1. Fernandez C, Kodish E, Weijer C: Informing study participants of research results: an ethical imperative. IRB 2003; 25: 12-19.
2. Shalowitz D, Miller F: Disclosing individual results of clinical research: implications of respect for participants. JAMA 2005; 294: 737-740. (Pubitemid 41159294)
3. Miller FA, Christensen R, Giacomini M, Robert J: Duty to disclose what? Querying the putative obligation to return research results to participants. JME 2008; 34: 210-213.
4. Meltzer L: Undesirable implications of disclosing individual genetic results to research participants. Am J Bioeth 2006; 6: 28-30. (Pubitemid 44691480)
5. Ossorio P: Letting the gene out of the bottle: a comment on returning individual research results to participants. Am J Bioeth 2006; 6: 24-25. (Pubitemid 44691478)
6. Miller FA, Hayeems RZ, Bytautas JP: What is a meaningful result? Disclosing the results of genomic research in autism to research participants. Eur J Hum Genet 2010; 18: 867-871.
7. Ioannidis J: Expectations, validity, and reality in omics. J Clin Epidemiol 2010; 63: 945-949.
8. Siontis K, Patsopoulos N, Ioannidis J: Replication of past candidate loci for common diseases and phenotypes in 100 genome-wide association studies. Eur J Hum Genet 2010; 18: 832-837.
9. Ioannidis J: Non-replication and inconsistency in the genome-wide association setting. Hum Hered 2007; 64: 203-213. (Pubitemid 47036983)
10. Hirschorn J, Lohmueller K, Byrne E, Hirschhorn K: A comprehensive review of genetic association studies. Genet Med 2002; 4: 45-61. (Pubitemid 44698579)
11. Renegar G, Webster C, Stuerzebecher S et al: Returning genetic research results to individuals: points to consider. Bioethics 2006; 20: 24-36. (Pubitemid 43168271)
12. Wade C, Kalfoglou A: When do genetic researchers have a duty to recontact study participants? Am J Bioeth 2006; 6: 26-27. (Pubitemid 44691479)
13. Fernandez C, C S, Weijer C: Considerations and costs of disclosing study findings to research participants. CMAJ 2004; 170: 1417-1419. (Pubitemid 38594635)
14. Bookman E, Langehorne A, Eckfeldt J et al: Reporting genetic results in research studies: summary and recommendations of an NHLBI Working Group. Am J Med Genet 2006; 140A: 1033-1040.
15. Pullman D, Hodgkinson K: Genetic knowledge and moral responsibility: ambiguity at the interface of genetic research and clinical practice. Clin Genet 2006; 69: 199-203. (Pubitemid 43349003)
16. Miller FA, Hayeems RZ, Li L, Bytautas JP: What does 'respect for persons' require? Attitudes and reported practices of genetics researchers in informing research participants about research. JME 2012; 38: 48-52.
17. Kim S-J, Silva R, Flores C et al: A quantitative association study of SLC25A12 and restricted repetitive behavior traits in autism spectrum disorders. Mol Autism 2011; 2: 8.
18. Chiri G, Warfield M: Unmet need and problems accessing core health care services for children with autism spectrum disorder. Matern Child Health J 2012; e-pub ahead of print 3 February 2012.
19. Szatmari P, Paterson A, Zwaigenbaum L, Roberts W, Briaj J, Liu X-Q: Mapping autism risk loci using genetic linkage and chromosomal arrangements. Nat Rev Genet 2007; 39: 319-328. (Pubitemid 46328498)
20. Weiss L, Shen Y, Korn J, Arking D, Miller D, Fossdal R: Association between microdeletion and microduplication at 16p11.2 and autism. NEJM 2008; 2008: 667-675. (Pubitemid 351240746)
21. Kerem B, Rommens J, Buchanan J et al: Identification of the cystic fibrosis gene: genetic analysis. Science 1989; 245: 1973-1980.
22. Park J, Yung R, Stefanowicz D et al: Cystic fibrosis modifier genes related to Pseudomonas aeruginosa infection. Genes Immun 2011; 12: 370-377.
23. Hayeems RZ, Miller FA, Li L, Bytautas JP: Not so simple: A quasi-experimental study of how researchers adjudicate genetic research results. Eur J Hum Genet 2011; 19: 740-747.
24. Dillman D, Smyth J, Christian L: Internet, Mail, and Mixed-Mode Surveys: The Tailored Design Method, 3rd ed. Hoboken, New Jersey: John Wiley & Sons, Inc, 2009.
25. Schwappach D, Koeck C: What makes an error unacceptable? A factorial survey on the disclosure of medical errors. Int J Quality Health Care 2004; 16: 317-326. (Pubitemid 39157543)
26. Applegate B, Turner M, Sanborn JJ, Latessa E, Moon M: Individualization, criminalization, or problem resolution: a factorial survey of juvenile court judges' decisions to incarcerate youthful felony offenders. Justice Quarterly 2000; 17: 309.
27. O'Toole R, Webster S, O'Toole A, Lucal B: Teachers' recognition and reporting of child abuse: a factorial survey. Child Abuse and Neglect 1999; 23: 1083-1101. (Pubitemid 29488461)
28. Goldman H, Rachuba L, Van Tosh L: Methods of assessing mental health consumers¢ preferences for housing and support services. Psychiatr Serv 1995; 46: 169-172.
29. Miller FA, Giacomini M, Ahern C, Robert J, de Laat S: When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results. BMC Medical Ethics 2008; 9: 4.
30. Hojsgaard S, Halekoh U, Yan J: The R package geepack for generalized estimating equations. J Stat Softw 2006; 15: 1-11. (Pubitemid 43037444)