Next-generation sequencing techniques enable unsolicited findings to be detected. This discovery raises ethical questions concerning the return of these findings. Our study aimed to highlight the views of the general public, patients under supervision and health professionals concerning the acceptability of disclosing unsolicited results to patients. In total, 449 participants assessed scenarios, consisted of all combinations of three factors (patient’s information and consent, prevention and treatment of the unsolicited disease and doctor’s decision). The response profiles were grouped into six clusters. The participants took ethical aspects into account, but health professionals also considered the medical aspects to a greater extent.
AndersonNH (1996) A Functional Theory of Cognition. Mahwah, NJ: Lawrence Erlbaum Associates.
2.
AndersonNH (2016) Information integration theory: Unified psychology based on three mathematical laws. Universitas Psychologica15(3). DOI: 10.11144/Javeriana.upsy15-3.iitu
3.
BeauchampTLChildressJF (2001) Principles of Biomedical Ethics (5th edn). Oxford: Oxford University Press.
4.
BergJSKhouryMJEvansJP (2011) Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time. Genetics in Medicine: Official Journal of the American College of Medical Genetics13(6): 499–504.
5.
BijlsmaRMBredenoordALGadellaa-HooijdonkCG, et al. (2016) Unsolicited findings of next-generation sequencing for tumor analysis within a Dutch consortium: Clinical daily practice reconsidered. European Journal of Human Genetics: EJHG24: 1496–1500.
6.
CantisanoNFerraudVMuñoz SastreMT, et al. (2018) Lay people’s conceptualizations regarding what determines fear of death. Current Psychology: 1–7.
7.
ChristenhuszGDevriendtKDierickxK (2013) To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts. European Journal of Human Genetics: EJHG21(3): 248–255.
8.
ChristenhuszGDevriendtKPeetersH, et al. (2014) The communication of secondary variants: Interviews with parents whose children have undergone array-CGH testing. Clinical Genetics86(3): 207–216.
9.
CliftKEHalversonCMEFiksdalAS, et al. (2015) Patients’ views on incidental findings from clinical exome sequencing. Applied & Translational Genomics4: 38–43.
10.
De MontgolfierS (2015) La médecine prédictive en oncologie, une discipline en construction: Quels changements dans les questions éthiques, quel regard sur la vie des individus concernés. SHS Web of Conferences21: 14.
11.
Décret no 2008-321 du 4 avril 2008 relatif à l’examen des caractéristiques génétiques d’une personne ou à son identification par empreintes génétiques à des fins médicales (2008).
12.
DowningNRWilliamsJKDaack-HirschS, et al. (2013) Genetics specialists’ perspectives on disclosure of genomic incidental findings in the clinical setting. Patient Education and Counseling90(1): 133–138.
13.
FlatauLHeilbronnerUSchulzeTG, et al. (2018) Genomic information and a person’s right not to know: A closer look at variations in hypothetical informational preferences in a German sample. PLoS ONE13(6): e0198249.
GliwaCYurkiewiczIRLehmannLS, et al. (2016) Institutional review board perspectives on obligations to disclose genetic incidental findings to research participants. Genetics in Medicine: Official Journal of the American College of Medical Genetics18(7): 705–711.
16.
GoldmanJSHahnSECataniaJW, et al. (2011) Genetic counseling and testing for Alzheimer disease: Joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors. Genetics in Medicine13(6): 597–605.
17.
GournaEGArmstrongNWallaceSE (2016) Compare and contrast: A cross-national study across UK, USA and Greek experts regarding return of incidental findings from clinical sequencing. European Journal of Human Genetics: EJHG24(3): 344–349.
18.
GreenRCBergJSGrodyWW, et al. (2013) ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genetics in Medicine: Official Journal of the American College of Medical Genetics15(7): 565–574.
19.
GreenbergMSmithRA (2015) Support seeking or familial obligation: An investigation of motives for disclosing genetic test results. Health Communication31: 668–678.
20.
HallowellNHallAAlbergC, et al. (2015) Revealing the results of whole-genome sequencing and whole-exome sequencing in research and clinical investigations: Some ethical issues. Journal of Medical Ethics41(4): 317–321.
Hehir-KwaJYClaustresMHastingsRJ, et al. (2015) Towards a European consensus for reporting incidental findings during clinical NGS testing. European Journal of Human Genetics23(12): 1601–1606.
23.
JohnstonJJRubinsteinWSFacioFM, et al. (2012) Secondary variants in individuals undergoing exome sequencing: Screening of 572 individuals identifies high-penetrance mutations in cancer-susceptibility genes. The American Journal of Human Genetics91(1): 97–108.
24.
KaliaSSAdelmanKBaleSJ, et al. (2017) 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. Genetics in Medicine19(2): 249–255.
25.
KohaneISMasysDRAltmanRB (2006) The incidentalome: A threat to genomic medicine. JAMA296(2): 212–215.
26.
LawrenceLSincanMMarkelloT, et al. (2014) The implications of familial incidental findings from exome sequencing: The NIH Undiagnosed Diseases Program experience. Genetics in Medicine: Official Journal of the American College of Medical Genetics16(10): 741–750.
27.
LefebvreMSanlavilleDMarleN, et al. (2016) Genetic counselling difficulties and ethical implications of incidental findings from array-CGH: A 7-year national survey. Clinical Genetics89(5): 630–635.
28.
LemmensT (2014) Informed consent. In: JolyYKnoppersBM (eds) Routledge Handbook of Medical Law and Ethics. Abingdon: Routledge, pp. 27–51.
29.
MarshallDAGonzalezJMJohnsonFR, et al. (2016) What are people willing to pay for whole-genome sequencing information, and who decides what they receive?Genetics in Medicine18(12): 1295–1302.
30.
MiddletonAMorleyKIBraginE, et al. (2015) Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research. European Journal of Human Genetics24: 21–29.
31.
MilunskyA (2017) The ‘new genetics’ in clinical practice: A brief primer. Journal of the American Board of Family Medicine: JABFM30(3): 377–379.
32.
MorrisonEE (2015) Ethics in Health Administration. Boston, MA: Jones & Bartlett Publishers.
33.
NeedACShashiVHitomiY, et al. (2012) Clinical application of exome sequencing in undiagnosed genetic conditions. Journal of Medical Genetics49(6): 353–361.
34.
NelenMVeltmanJA (2012) Genome and exome sequencing in the clinic: Unbiased genomic approaches with a high diagnostic yield. Pharmacogenomics13(5): 511–514.
35.
ParensEAppelbaumPChungW (2013) Incidental findings in the era of whole genome sequencing?The Hastings Center Report43(4): 16–19.
36.
RabbaniBMahdiehNHosomichiK, et al. (2012) Next-generation sequencing: Impact of exome sequencing in characterizing Mendelian disorders. Journal of Human Genetics57(10): 621–632.
37.
RegierDAPeacockSJPatakyR, et al. (2015) Societal preferences for the return of incidental findings from clinical genomic sequencing: A discrete-choice experiment. Canadian Medical Association Journal187(6): E190–E197. Available at: https://doi.org/10.1503/cmaj.140697
38.
RichardsonA (2014) Incidental findings and future testing methodologies: Potential application of the ACMG 2013 recommendations. Journal of Law and the Biosciences1(3): 378–387.
39.
RigterTHennemanLKristofferssonU, et al. (2013) Reflecting on earlier experiences with unsolicited findings: Points to consider for next-generation sequencing and informed consent in diagnostics. Human Mutation34(10): 1322–1328.
40.
RigterTvan AartCJAEltingMW, et al. (2014) Informed consent for exome sequencing in diagnostics: Exploring first experiences and views of professionals and patients. Clinical Genetics85(5): 417–422.
41.
RothsteinMA (2013) Should researchers disclose results to descendants?American Journal of Bioethics13(10): 64–65.
42.
RyanKADe VriesRGUhlmannWR, et al. (2017) Public’s views toward return of secondary results in genomic sequencing: It’s (almost) all about the choice. Journal of Genetic Counseling26: 1197–1212.
43.
SaelaertMMertesHBaereED, et al. (2018) Incidental or secondary findings: An integrative and patient-inclusive approach to the current debate. European Journal of Human Genetics26: 1424–1431.
44.
SchaeferGOSavulescuJ (2018) The right to know: A revised standard for reporting incidental findings. Hastings Center Report48(2): 22–32.
45.
SkirtonHGoldsmithLJacksonL, et al. (2013) Quality in genetic counselling for presymptomatic testing – Clinical guidelines for practice across the range of genetic conditions. European Journal of Human Genetics21(3): 256–260.
46.
SundbyABoolsenMWBurgdorfKS, et al. (2017) Stakeholders in psychiatry and their attitudes toward receiving pertinent and incident findings in genomic research. American Journal of Medical Genetics: Part A173(10): 2649–2658.
47.
TownsendAAdamSBirchPH, et al. (2012) ‘I want to know what’s in Pandora’s Box’: Comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing. American Journal of Medical Genetics: Part A158(10): 2519–2525.
48.
Van ElCGCornelMCBorryP, et al. (2013) Whole-genome sequencing in health care. European Journal of Human Genetics21(6): 580–584.
49.
VibergJHanssonMGLangenskiöldS, et al. (2014) Incidental findings: The time is not yet ripe for a policy for biobanks. European Journal of Human Genetics22(4): 437–441.
50.
Villarreal-TreviñoMGVillarreal-LozanoRJMorales-MartinezGE, et al. (2017) Engineering students’ self-efficacy judgment to solve mathematical problems in the classroom or online. European Journal of Educational Research6(4): 465–473.
51.
VolkMLUbelPA (2011) Better off not knowing: Improving clinical care by limiting physician access to unsolicited diagnostic information. Archives of Internal Medicine171(6): 487–488.
52.
WeberSBüscherAHagmannH, et al. (2016) Dealing with the incidental finding of secondary variants by the example of SRNS patients undergoing targeted next-generation sequencing. Pediatric Nephrology31(1): 73–81.
53.
WolfSMLawrenzFPNelsonCA, et al. (2008) Managing incidental findings in human subjects research: Analysis and recommendations. The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics36(2): 219–248, 211.
54.
WoutersRHPCornelisCNewsonAJ, et al. (2017) Scanning the body, sequencing the genome: Dealing with unsolicited findings. Bioethics31: 648–656.
55.
YuJ-HHarrellTMJamalSM, et al. (2014) Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing. American Journal of Human Genetics95(1): 77–84.
56.
YushakMLHanGBouberhanS, et al. (2016) Patient preferences regarding incidental genomic findings discovered during tumor profiling. Cancer122(10): 1588–1597.
