To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

European Journal of Human Genetics

Volumn 21, Issue 3, 2013, Pages 248-255

  Christenhusz, Gabrielle M ^a   Devriendt, Koenraad ^a   Dierickx, Kris ^a  

^a UNIVERSITY OF LEUVEN   (Belgium)

Author keywords

clinical genetics; ethics; incidental findings; research; whole genome sequencing

Indexed keywords

CONSENSUS; DATA BASE; ENVIRONMENTAL FACTOR; GENETIC SCREENING; GENETICS; HUMAN; INCIDENTAL FINDING; INTERPERSONAL COMMUNICATION; MEDICAL ETHICS; PATERNALISM; PRIORITY JOURNAL; REVIEW; SYSTEMATIC REVIEW; THERAPEUTIC MISCONCEPTION;

DISCLOSURE; GENETIC RESEARCH; GENETIC TESTING; HUMANS; INCIDENTAL FINDINGS;

EID: 84874109945     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2012.130     Document Type: Review

References (38)

1. Wolf S, Lawrenz F, Nelson C et al: Managing incidental findings in human subjects research: analysis and recommendations. J Law Med Ethics 2008; 36: 219-248.
2. Roof K, Gregorio DI, Kulko J, Palermino D: Incidental findings in a federally-sponsored cancer screening program. J Community Health 1999; 24: 305-312.
3. Wachbroit R: The question not asked: the challenge of pleiotropic genetic tests. Kennedy Inst Ethics J 1998; 8: 131-144.
4. Lumbreras B, Donat L, Hernandez-Aguado I: Incidental findings in imaging diagnostic tests: a systematic review. Br J Radiol 2010; 83: 276-289.
5. Morris Z, Whiteley WN, Longstreth WT et al: Incidental findings on brain magnetic resonance imaging: systematic review and meta-analysis. BMJ 2009; 339: b3016.
6. Siddiki H, Fletcher JG, McFarland B et al: Incidental findings in CT colonography: literature review and survey of current research practice. J Law Med Ethics 2008; 36: 320-331, 213.
7. Miller F, Hayeems R, Bombard Y et al: Clinical obligations and public health programmes: healthcare provider reasoning about managing the incidental results of newborn screening. J Med Ethics 2009; 35: 626-634.
8. Van Ness B: Genomic research and incidental findings. J Law Med Ethics 2008; 36: 292-297.
9. Burke W, Tarini B, Press NA, Evans JP: Genetic screening. Epidemiol Rev 2011; 33: 148-164.
10. Evans JP: Looking ahead, looking behind. Introduction. Genet Med 2011; 13: 177-178.
11. Ali-Khan S, Daar A, Shuman C, Ray P, Scherer S: Whole genome scanning: resolving clinical diagnosis and management amidst complex data. Pediatr Res 2009; 66: 357-363.
12. 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: 398-403.
13. Kohane I, Masys D, Altman R: The incidentalome: a threat to genomic medicine. JAMA 2006; 296: 212-215.
14. Sofaer N, Strech D: The need for systematic reviews of reasons. Bioethics 2011 Epub ahead of print.
15. Strech D, Sofaer N: How to write a systematic review of reasons. J Med Ethics 2012; 38: 121-126.
16. Botkin J: Genetic counseling: making room for beneficence. J Clin Ethics 1995; 6: 182-184.
17. Cho M: Understanding incidental findings in the context of genetics and genomics. J Law Med Ethics 2008; 36: 280-285.
18. Clayton E: Incidental findings in genetics research using archived DNA. J Law Med Ethics 2008; 36: 286-291.
19. Hens K, Nys H, Cassiman J, Dierickx K: The return of individual research findings in paediatric genetic research. J Med Ethics 2011; 37: 179-183.
20. Parker L, Majeske R: Incidental findings: patients' knowledge, rights, and preferences. J Clin Ethics 1995; 6: 176-179.
21. Tabor H, Cho M: Ethical implications of array comparative genomic hybridization in complex phenotypes: points to consider in research. Genet Med 2007; 9: 626-631.
22. Caulfield T, McGuire A, Cho M et al: Research ethics recommendations for wholegenome research: consensus statement. PLoS Biology 2008; 6: e73.
23. McGuire A, Caulfield T, Cho M: Research ethics and the challenge of whole-genome sequencing. Nat Rev Genet 2008; 9: 152-156.
24. Rotimi CN, Marshall PA: Tailoring the process of informed consent in genetic and genomic research. Genome Med 2010; 2: 20.
25. Parker L: The future of incidental findings: should they be viewed as benefits? J Law Med Ethics 2008; 36: 341-351.
26. Ross LF: Good ethics requires good science: why transplant programs should not disclose misattributed parentage. Am J Transplant 2010; 10: 742-746.
27. Mayer AN, Dimmock DP, Arca MJ et al: A timely arrival for genomic medicine. Genet Med 2011; 13: 195-196.
28. Bamshad MJ, Ng SB, Bigham AW et al: Exome sequencing as a tool for Mendelian disease gene discovery. Nat Rev Genet 2011; 12: 745-755.
29. Cooper GM, Shendure J: Needles in stacks of needles: finding disease-causal variants in a wealth of genomic data. Nat Rev Genet 2011; 12: 628-640.
30. Lanie AD, Jayaratne TE, Sheldon JP et al: Exploring the public understanding of basic genetic concepts. J Genet Couns 2004; 13: 305-320.
31. Burke W, Pinsky LE, Press NA: Categorizing genetic tests to identify their ethical, legal, and social implications. Am J Med Genet 2001; 106: 233-240.
32. Miller F, Mello M, Joffe S: Incidental findings in human subjects research: what do investigators owe research participants? J Law Med Ethics 2008; 36: 271-279.
33. Wolf S, Paradise J, Caga-anan C: The law of incidental findings in human subjects research: establishing researchers' duties. J Law Med Ethics 2008; 36: 361-383.
34. Wolf S: Introduction: the challenge of incidental findings. J Law Med Ethics 2008; 36: 216-218.
35. Knoppers B, Joly Y, Simard J, Durocher F: The emergence of an ethical duty to disclose genetic research results: international perspectives. Eur J Hum Genet 2006; 14: 1170-1178.
36. Ravitsky V, Wilfond B: Disclosing individual genetic results to research participants. AJOB 2006; 6: 8-17.
37. Sharp H, Orr R: When 'minimal risk' research yields clinically- significant data, maybe the risks aren't so minimal. AJOB 2004; 4: W32-W36.
38. Health Council of the Netherlands: The 'thousand-dollar genome': an ethical exploration. Monitoring Report Ethics and Health. The Hague: Centre for Ethics and Health, 2010.