Research participants in NGS studies want to know about incidental findings

European Journal of Human Genetics

Volumn 23, Issue 10, 2015, Pages 1423-1426

  Jelsig, Anne Marie ^a   Qvist, Niels ^a   Brusgaard, Klaus ^a   Ousager, Lilian Bomme ^a  

^a ODENSE UNIVERSITY HOSPITAL   (Denmark)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CONFIDENTIALITY; ETHICAL DECISION MAKING; FEMALE; GASTROINTESTINAL POLYPOSIS; GENETIC ASSOCIATION; GENETIC RISK; GENETIC VARIABILITY; HIGH RISK PATIENT; HUMAN; INCIDENTAL FINDING; INTERPERSONAL COMMUNICATION; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION; NEXT GENERATION SEQUENCING; PATIENT ATTITUDE; PATIENT DECISION MAKING; PRIORITY JOURNAL; RESEARCH SUBJECT; SEQUENCE ANALYSIS; WHOLE EXOME SEQUENCING; ADOLESCENT; ETHICS; GENETIC VARIATION; GENETICS; HIGH THROUGHPUT SEQUENCING; MEDICAL RESEARCH; MIDDLE AGED; PROCEDURES; VERY ELDERLY; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; BIOMEDICAL RESEARCH; DISCLOSURE; FEMALE; GENETIC VARIATION; HIGH-THROUGHPUT NUCLEOTIDE SEQUENCING; HUMANS; INCIDENTAL FINDINGS; MALE; MIDDLE AGED; YOUNG ADULT;

EID: 84944158890     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2014.298     Document Type: Article

References (22)

1. Ormond KE, Wheeler MT, Hudgins L et al: Challenges in the clinical application of whole-genome sequencing. Lancet 2010; 375: 1749-1751.
2. Gliwa C, Berkman BE: Do researchers have an obligation to actively look for genetic incidental findings? Am J Bioeth 2013; 13: 32-42.
3. Evans BJ: Minimizing liability risks under the ACMG recommendations for reporting incidental findings in clinical exome and genome sequencing. Genet Med 2013; 15: 915-920.
4. McGuire AL, Joffe S, Koenig BA et al: Point-counterpoint. Ethics and genomic incidental findings. Science 2013; 340: 1047-1048.
5. Biesecker LG: Opportunities and challenges for the integration of massively parallel genomic sequencing into clinical practice: lessons from the ClinSeq project. Genet Med 2012; 14: 393-398.
6. Biesecker LG: Incidental variants are critical for genomics. Am J Hum Genet 2013; 92: 648-651.
7. Wolf SM, Lawrenz FP, Nelson CA et al: Managing incidental findings in human subjects research: analysis and recommendations. J Law Med Ethics 2008; 36: 219-248, 211.
8. Yang Y,MuznyDM,ReidJGet al: Clinical whole-exome sequencing for the diagnosis of mendelian disorders. N Engl J Med 2013; 369: 1502-1511.
9. Green RC, Berg JS, Grody WW et al: ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genet Med 2013; 15: 565-574.
10. Burke W, Matheny Antommaria AH, Bennett R et al: Recommendations for returning genomic incidental findings? We need to talk!. Genet Med 2013; 15: 854-859.
11. Wolf SM, Annas GJ, Elias S: Point-counterpoint. Patient autonomy and incidental findings in clinical genomics. Science 2013; 340: 1049-1050.
12. Allyse M, Michie M: Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing. Trends Biotechnol 2013; 31: 439-441.
13. Jackson L, Goldsmith L, O'Connor A, Skirton H: Incidental findings in genetic research and clinical diagnostic tests: a systematic review. Am J Med Genet A 2012; 158A: 3159-3167.
14. Steinsbekk KS, Solberg B: Should genetic findings from genome research be reported back to the participants? Tidsskr Nor Laegeforen 2012; 132: 2190-2193.
15. 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: 31-41.
16. Klitzman R, Appelbaum PS, Fyer A et al: Researchers' views on return of incidental genomic research results: qualitative and quantitative findings. Genet Med 2013; 15: 888-895.
17. Lohn Z, Adam S, Birch PH, Friedman JM: Incidental Findings from Clinical Genome-Wide Sequencing: A Review. J Genet Couns 2013; 23: 463-473.
18. Christenhusz GM, Devriendt K, Dierickx K: To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts. Eur J Hum Genet 2013; 21: 248-255.
19. Facio FM, Eidem H, Fisher T et al: Intentions to receive individual results from wholegenome sequencing among participants in the ClinSeq study. Eur J Hum Genet 2013; 21: 261-265.
20. Shahmirzadi L, Chao EC, Palmaer E, Parra MC, Tang S, Gonzalez KD: Patient decisions for disclosure of secondary findings among the first 200 individuals undergoing clinical diagnostic exome sequencing. Genet Med 2014; 16: 395-399.
21. Sapp J, Dong D, Stark C et al: Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children. Clin Genet 2014; 85: 120-126.
22. Viberg J, Hansson MG, Langenskiold S, Segerdahl P: Incidental findings: the time is not yet ripe for a policy for biobanks. Eur J Hum Genet 2014; 22: 437-441.