Erratum : Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project (European Journal of Human Genetics (2016) 24, (14-20)) doi:10.1038/ejhg.2015.118);Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project

European Journal of Human Genetics

Volumn 24, Issue 1, 2016, Pages 14-20

  Sanderson, Saskia C ^a   Linderman, Michael D ^a   Suckiel, Sabrina A ^a   Diaz, George A ^a   Zinberg, Randi E ^a   Ferryman, Kadija ^b   Wasserstein, Melissa ^a   Kasarskis, Andrew ^a   Schadt, Eric E ^a  

^a MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^b NEW SCHOOL FOR SOCIAL RESEARCH   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; COHORT ANALYSIS; DATA BASE; EXOME; FAMILY HISTORY; FEMALE; GENE SEQUENCE; GENETIC PRIVACY; GENETIC RISK; GENOME ANALYSIS; GENOTYPE; HUMAN; INTERVIEW; LONGITUDINAL STUDY; MALE; MEDICAL RESEARCH; MIDDLE AGED; MOTIVATION; PHENOTYPE; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; QUANTITATIVE ANALYSIS; QUESTIONNAIRE; RISK ASSESSMENT; SELF EVALUATION; WHOLE GENOME SEQUENCING; YOUNG ADULT; AGED; CHROMOSOMAL MAPPING; DNA SEQUENCE; ETHICS; HIGH THROUGHPUT SEQUENCING; HUMAN GENOME; INFORMATION DISSEMINATION; INFORMED CONSENT; PERSONALIZED MEDICINE;

ADULT; AGED; CHROMOSOME MAPPING; EXOME; FEMALE; GENETIC PRIVACY; GENOME, HUMAN; HIGH-THROUGHPUT NUCLEOTIDE SEQUENCING; HUMANS; INFORMATION DISSEMINATION; INFORMED CONSENT; LONGITUDINAL STUDIES; MALE; MIDDLE AGED; MOTIVATION; PRECISION MEDICINE; SEQUENCE ANALYSIS, DNA;

EID: 84951574112     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2015.179     Document Type: Erratum

References (29)

1. Church GM. The personal genome project. Mol Syst Biol 2005; 1: 2005
2. Ashley EA, Butte AJ, Wheeler MT et al. Clinical assessment incorporating a personal genome. Lancet 2010; 375: 1525-1535
3. Gonzalez-Garay ML, McGuire AL, Pereira S, Caskey CT. Personalized genomic disease risk of volunteers. Proc Natl Acad Sci USA 2013; 110: 16957-16962
4. Vassy JL, Lautenbach DM, McLaughlin HM et al. The MedSeq Project: a randomized trial of integrating whole genome sequencing into clinical medicine. Trials 2014; 15: 1-12
5. Yang Y, Muzny DM, Xia F et al. Molecular findings among patients referred for clinical whole-exome sequencing. JAMA 2014; 312: 1870-1879
6. Jacob HJ, Abrams K, Bick DP et al. Genomics in clinical practice: lessons from the front lines. Sci Transl Med 2013; 5: 194cm5
7. Biesecker LG, Green RC. Diagnostic clinical genome and exome sequencing. N Engl J Med 2014; 371: 1170
8. Angrist M. Eyes wide open: the personal genome project, citizen science and veracity in informed consent. Per Med 2006; 6: 691-699
9. Goldberger JJ, Buxton AE. Personalized medicine vs guideline-based medicine. JAMA 2013; 309: 2559-2560
10. Sanderson SC. Genome sequencing for healthy individuals. Trends Genet 2013; 29: 556-558
11. Caulfield T, Evans J, McGuire A et al. Reflections on the cost of low-cost whole genome sequencing: framing the health policy debate. PLoS Biol 2013; 11: e1001699
12. Bloss CS, Ornowski L, Silver E, Cargill M et al. Consumer perceptions of direct-toconsumer personalized genomic risk assessments. Genet Med 2010; 12: 556-566
13. Gollust SE, Gordon ES, Zayac C et al. Motivations and perceptions of early adopters of personalized genomics: perspectives from research participants. Public Health Genomics 2012; 15: 22-30
14. Vayena E, Gourna E, Streuli J, Hafen E, Prainsack B. Experiences of early users of direct-to-consumer genomics in Switzerland: an exploratory study. Public Health Genomics 2012; 15: 352-362
15. Facio FM, Brooks S, Loewenstein J, Green S, Biesecker LG, Biesecker BB. Motivators for participation in a whole-genome sequencing study: implications for translational genomics research. Eur J Hum Genet 2011; 19: 1213-1217
16. Facio FM, Sapp JC, Linn A, Biesecker LG. Approaches to informed consent for hypothesis-testing and hypothesis-generating clinical genomics research. BMC Med Genomics 2012; 5: 45
17. 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
18. Jamal L, Sapp JC, Lewis K et al. Research participants attitudes towards the confidentiality of genomic sequence information. Eur J Hum Genet 2014; 22: 964-968
19. Kaufman D, Murphy J, Scott J, Hudson K. Subjects matter: a survey of public opinions about a large genetic cohort study. Genet Med 2008; 10: 831-839
20. Bollinger JM, Scott J, Dvoskin R, Kaufman D. Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study. Genet Med 2012; 14: 451-457
21. Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W. Genomic research and wide data sharing: views of prospective participants. Genet Med 2010; 12: 486-495
22. Haga SB, O'Daniel J. Public perspectives regarding data-sharing practices in genomics research. Public Health Genomics 2011; 14: 319-324
23. Oliver JM, Slashinski MJ, Wang T, Kelly PA, Hilsenbeck SG, McGuire AL. Balancing the risks and benefits of genomic data sharing: genome research participants perspectives. Public Health Genomics 2012; 15: 106-114
24. Shabani M, Bezuidenhout L, Borry P. Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review. Expert Rev Mol Diagn 2014; 14: 1053-1065
25. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77-101
26. Su Y, Howard HC, Borry P. Users motivations to purchase direct-to-consumer genomewide testing: an exploratory study of personal stories. J Community Genet 2011; 2: 135-146
27. Wagner JK, Cooper JD, Sterling R, Royal CD. Tilting at windmills no longer: a data-driven discussion of DTC DNA ancestry tests. Genet Med 2012; 14: 586-593
28. Green RC, Lautenbach D, McGuire AL. GINA, genetic discrimination, and genomic medicine. N Engl J Med 2015; 372: 397-399
29. Waller J, McCaffery K, Wardle J. Measuring cancer knowledge: comparing prompted and unprompted recall. Br J Psychol 2004; 95: 219-234