Managing clinically significant findings in research: The UK10K example

European Journal of Human Genetics

Volumn 22, Issue 9, 2014, Pages 1100-1104

  Kaye, Jane ^a   Hurles, Matthew ^b   Griffin, Heather ^a   Grewal, Jasote ^c   Bobrow, Martin ^d   Timpson, Nic ^e   Smee, Carol ^b   Bolton, Patrick ^f   Durbin, Richard ^b   Dyke, Stephanie ^b   Fitzpatrick, David ^g   Kennedy, Karen ^b   Kent, Alastair ^h   Muddyman, Dawn ^b   Muntoni, Francesco ⁱ   Raymond, Lucy F ^d   Semple, Robert ^d   Spector, Tim ^j  

^a UNIVERSITY OF OXFORD   (United Kingdom)

^b WELLCOME TRUST SANGER INSTITUTE   (United Kingdom)

^c LEIBNIZ UNIVERSITY HANNOVER   (Germany)

^d UNIVERSITY OF CAMBRIDGE   (United Kingdom)

^e UNIVERSITY OF BRISTOL   (United Kingdom)

^f KING'S COLLEGE LONDON   (United Kingdom)

^g UNIVERSITY OF EDINBURGH   (United Kingdom)

^h GENETIC ALLIANCE UK   (United Kingdom)

ⁱ UNIVERSITY COLLEGE LONDON   (United Kingdom)

^j ST THOMAS HOSPITAL   (United Kingdom)

more..

Author keywords

consortia; ethics; incidental findings; management pathway; research; sequencing

Indexed keywords

ARTICLE; CLINICAL GENETICS; CLINICAL RESEARCH; CLINICALLY SIGNIFICANT FINDING; FEEDBACK SYSTEM; GENE SEQUENCE; GENETIC COUNSELING; GENETIC VARIABILITY; HUMAN; HUMAN GENOME; INCIDENTAL FINDING; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; LIFESPAN; MEDICAL INFORMATION SYSTEM; PRIORITY JOURNAL; RESEARCH ETHICS; SCIENTIST; SEQUENCE ANALYSIS; UNITED KINGDOM; CLINICAL PATHWAY; CLINICAL STUDY; COHORT ANALYSIS; CONCEPTUAL FRAMEWORK; DIAGNOSIS; GENE FREQUENCY; GENETICS; GENOME; GENOMICS; INFORMATION MODEL; LIBRARY SCIENCE; MEDICAL INFORMATION; NURSE RESEARCHER; PHENOTYPE; POPULATION RESEARCH; REFERENCE DATABASE; RISK FACTOR; DNA SEQUENCE; ETHICS; GREAT BRITAIN; INFORMATION DISSEMINATION; INFORMATION SYSTEM; MEDICAL GENETICS; MEDICAL RESEARCH; ORGANIZATION AND MANAGEMENT; PROCEDURES;

DNA;

BIOMEDICAL RESEARCH; GENETICS, MEDICAL; GREAT BRITAIN; INCIDENTAL FINDINGS; INFORMATION DISSEMINATION; INFORMATION MANAGEMENT; SEQUENCE ANALYSIS, DNA;

EID: 84906278230     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2013.290     Document Type: Article

References (15)

1. Parker LS: The future of incidental findings: should they be viewed as benefits? J Law Med Ethics 2008; 36: 341-351.
2. Knoppers BM, Deschenes M, Zawati MH, Tasse AM: Population studies; return of research results and incidental findings. Policy statement. Eur J Hum Genet 2012; 14: 1170-1178.
3. Miller FA, Christensen R, Giacomini M et al: Duty to disclose what? Querying the putative obligation to return research results to participants. J Med Ethics 2008; 34: 210-213.
4. 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.
5. Bovenberg J, Meulenkamp T, Smets E, Gevers S: Biobank research: reporting results to individual participants. Eur J Health Law 2009; 16: 229-247.
6. Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K: Public expectations for return of results from large-cohort genetic research. Am J Bioethics 2008; 8: 36-43.
7. Matsui K, Lie RK, Kita Y, Ueshima H: Ethics of future disclosure of individual risk information in a Genetic cohort study: a survey of donor preferences. J Epidemiol 2008; 18: 217-224.
8. Commissioned by the Wellcome Trust and MRC. Assessing Public Attitudes to Health Related Findings in Research: Summary 2012.
9. Wolf SM, Crock BN, Van Ness B et al: Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genet Med 2012; 14: 361-384.
10. Downing NR, Williams JK, Daack-Hirsch S, Driessnack M, Simon CM: Genetics specialists' perspectives on disclosure of genomic incidental findings in the clinical setting. Patient Education Counseling 2013; 90: 133-138.
11. 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.
12. Canadian Institutes of Health Research. Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans 2010 Art. 3.4.
13. ClinSeq Website. http://www.genome.gov/20519355 (accessed 2013)
14. UK10K website: 'What is UK10K'. ohttp://www.uk10k.org/4 (accessed 2013)
15. UK10K Ethical Governance Framework. ohttp://www.uk10k.org/assets/ef- uk10k-v21. pdf4 (accessed 2013).