Research participants' attitudes towards the confidentiality of genomic sequence information

European Journal of Human Genetics

Volumn 22, Issue 8, 2014, Pages 964-968

  Jamal, Leila ^a,b   Sapp, Julie C ^c   Lewis, Katie ^c   Yanes, Tatiane ^d   Facio, Flavia M ^c   Biesecker, Leslie G ^c   Biesecker, Barbara B ^c  

^a KENNEDY KRIEGER INSTITUTE   (United States)

^b JOHNS HOPKINS BLOOMBERG SCHOOL OF PUBLIC HEALTH   (United States)

^c NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

^d GRIFFITH UNIVERSITY   (Australia)

Author keywords

confidentiality; genomics; privacy

Indexed keywords

ADULT; AGED; ATTITUDE; CLINICAL ARTICLE; CLINICAL PROTOCOL; CLINICAL RESEARCH; CONFIDENTIALITY; CONGENITAL MALFORMATION; CONTROLLED STUDY; FEMALE; GENE SEQUENCE; GENOME; GENOMICS; GROWTH DISORDER; HUMAN; MALE; MEDICAL INFORMATION; MOTIVATION; NATIONAL HEALTH ORGANIZATION; POPULATION GENETICS; PRIMARY HYPERPARATHYROIDISM; PRIORITY JOURNAL; RESEARCH SUBJECT; REVIEW; SCIENTIST; SEMI STRUCTURED INTERVIEW; TRUST; UNCERTAINTY; ATTITUDE TO HEALTH; GENETIC PRIVACY; HEALTH CARE SURVEY; INFORMATION DISSEMINATION; MIDDLE AGED; QUESTIONNAIRE; UNITED STATES; ARTICLE; FOLLOW UP; GENETIC COUNSELING; GENETIC SCREENING; INFORMED CONSENT; PATIENT ATTITUDE; QUALITATIVE RESEARCH;

ADULT; AGED; CONFIDENTIALITY; FEMALE; GENETIC PRIVACY; HEALTH CARE SURVEYS; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INFORMATION DISSEMINATION; MALE; MIDDLE AGED; NATIONAL INSTITUTES OF HEALTH (U.S.); RESEARCH SUBJECTS; SURVEYS AND QUESTIONNAIRES; UNITED STATES;

EID: 84904684261     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2013.276     Document Type: Review

References (27)

1. Lin Z, Owen AB, Altman RB: Genetics. Genomic research and human subject privacy. Science 2004; 305: 183.
2. Anderlik MR, Rothstein MA: Privacy and confidentiality of genetic information: what rules for the new science? Annu Rev Genomics Hum Genet 2001; 2: 401-433.
3. Anderlik MR, Rothstein MA: Privacy and confidentiality of genetic information: what rules for the new science? Annu Rev Genomics Hum Genet 2001; 2: 401-433.
4. Johnson S, Kass NE, Natowicz M: Disclosure of personal medical information: differences among parents and affected adults for genetic and nongenetic conditions. Genetic Testing 2005; 9: 269-280.
5. Heeney C, Hawkins N, de Vries J, Boddington P, Kaye J: Assessing the privacy risks of data sharing in genomics. Public Health Genomics 2011; 14: 17-25.
6. 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.
7. Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y: Identifying personal genomes by surname inference. Science 2013; 339: 321-324.
8. Tabor HK, Berkman BE, Hull SC, Bamshad MJ: Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research. Am J Med Genetics A 2011; 155A: 2916-2924.
9. Biesecker LG, Mullikin JC, Facio FM et al: The ClinSeq Project: piloting large-scale genome sequencing for research in genomic medicine. Genome Res 2009; 19: 1665-1674.
10. 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 2013; e-pub ahead of print 20 August 2013; doi:10.1111/cge.12254.
11. Bradley EH, Curry LA, Devers KJ: Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res 2007; 42: 1758-1772.
12. Hayden EC: Geneticists push for global data-sharing. Nature 2013; 498: 16-17.
13. Katsnelson A: Delays in updates to ethics guidelines for research spark concern. Nature Med 2013; 19: 511.
14. Carinci F, Di Iorio CT, Ricciardi W, Klazinga N, Verschuuren M: Revision of the European Data Protection Directive: opportunity or threat for public health monitoring? Eur J Public Health 2011; 21: 684-685.
15. Coppieters Y, Leveque A: Ethics, privacy and the legal framework governing medical data: opportunities or threats for biomedical and public health research? Arch Public Health 2013; 71: 15.
16. Tabor HK, Stock J, Brazg T et al: Informed consent for whole genome sequencing: A qualitative analysis of participant expectations and perceptions of risks, benefits, and harms. Am J Med Genetics A 2012; 158A: 1310-1319.
17. Lemke AA, Wolf WA, Hebert-Beirne J, Smith ME: Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 2010; 13: 368-377.
18. Ludman EJ, Fullerton SM, Spangler L et al: Glad you asked: participants' opinions of re-consent for dbGap data submission. J Empir Res Hum Res Ethics 2010; 5: 9-16.
19. Hobbs A, Starkbaum J, Gottweis U, Wichmann HE, Gottweis H: The privacy-reciprocity connection in biobanking: Comparing German with UK strategies. Public Health Genomics 2012; 15: 272-284.
20. Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL: Public opinion about the importance of privacy in biobank research. Am J Hum Genet 2009; 85: 643-654.
21. Trinidad SB, Fullerton SM, Bares JM et al: Genomic research and wide data sharing: views of prospective participants. Genet Med 2010; 12: 486-495.
22. Terry SF, Shelton R, Biggers G, Baker D, Edwards K: The haystack is made of needles. Genet Testing Mol Biomarkers 2013; 17: 175-177.
23. Trakadis YJ: Patient-controlled encrypted genomic data: An approach to advance clinical genomics. BMC Med Genomics 2012; 5: 31.
24. O'Doherty KC, Burgess MM, Edwards K et al: From consent to institutions: designing adaptive governance for genomic biobanks. Social Sci Med 2011; 73: 367-374.
25. Kaye J: The tension between data sharing and the protection of privacy in genomics research. Annu Rev Genomics Hum Genet 2012; 13: 415-431.
26. Kuehn BM: Groups experiment with digital tools for patient consent. JAMA 2013; 310: 678-680.
27. Salari K, Karczewski KJ, Hudgins L, Ormond KE: Evidence that personal genome testing enhances student learning in a course on genomics and personalized medicine. PLoS One 2013; 8: e68853.