Biomedical databases: Protecting privacy and promoting research

Trends in Biotechnology

Volumn 21, Issue 3, 2003, Pages 113-116

  Wylie, Jean E ^a,b   Mineau, Geraldine P ^b  

^a UNIVERSITY OF UTAH   (United States)

^b UNIVERSITY OF UTAH SCHOOL OF MEDICINE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

DATABASE SYSTEMS; EPIDEMIOLOGY; GENES; RESEARCH;

SUPERLATIVE RESOURCES;

BIOMEDICAL ENGINEERING;

MEDICINE;

CONFIDENTIALITY; DATA BASE; GENETICS; HUMAN; MEDICAL INFORMATION; MEDICAL RESEARCH; PRIORITY JOURNAL; PRIVACY; REVIEW;

EID: 0037334489     PISSN: 01677799     EISSN: None     Source Type: Journal    
DOI: 10.1016/S0167-7799(02)00039-2     Document Type: Review

References (23)

1. Miki Y., et al. A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science. 266:1994;66-71.
2. Easton D.F., et al. Cancer risks in two large breast cancer families linked to BRCA2 on chromosome 13q12-13. Am. J. Hum. Genet. 61:1997;120-128.
3. Grant S.F.A., et al. The inheritance of rheumatoid arthritis in Iceland. Arthritis Rheum. 44:2001;2247-2254.
4. Pharoah P., et al. Polygenic susceptibility to breast cancer and implications for prevention. Nat. Genet. 31:2002;33-36.
5. Kaiser J. Population Databases Boom, From Iceland to the U.S. Science. 298:2002;1158-1161.
6. Phimister B. Protecting individuals and promoting science. Nat. Genet. 28:2001;195-196.
7. Alpert S.A. Health care information: access, confidentiality, and good practice. Goodman K.W. Ethics, Computing and Medicine: Informatics and the Transformation of Health Care. 1998;75-101 Cambridge University Press.
8. Willison D.J. Health services research and personal health information: privacy concerns, new legislation and beyond. C.M.A.J. 159:1998;1378-1380.
9. O'Brien D.G., Yasnoff W.A. Privacy, confidentiality, and security in information systems of state health agencies. Am. J. Prev. Med. 16:1999;351-360.
10. Sweeney L. Weaving technology and policy together to maintain confidentiality. J. Law Med. Ethics. 25:1997;98-110.
11. Utah Code Annotated (1953) Sections 63-2-85.3(1) and 26-25-1, et seq.
12. Skolnick M., et al. A computerized family history database system. Soc. Sci. Res. 63:1979;506-523.
13. Skolnick M., et al. A population-based assessment of familial cancer risk in Utah Mormon genealogies. Arrighi F.E., et al. Genes, Chromosomes, and Neoplasia. 1981;Raven Press.
14. Simon G.E., et al. Large medical databases, population-based research, and patient confidentiality. Am. J. Psychiatry. 157:2000;1731.
15. Hagey J. Privacy and confidentiality practices for research with health information in Canada. J. Law Med. Ethics. 25:1997;130-138.
16. Bouchard G., et al. Population files and database management: the BALSAC database and the INGRES/INGRID system. Hist. Mes. 4:1989;39-57.
17. Lamberg L. Confidentiality and privacy of electronic medical records: psychiatrists explore risks of the information age. JAMA. 285:2001;3075-3076.
18. Gulcher J., et al. The genealogic approach to human genetics of disease. Cancer J. 7:2001;61-68.
19. Gulcher J., Steffanson K. The Icelandic Healthcare Database: a tool to create knowledge, a social debate, and a bioethical and privacy challenge. Mol. Med. 1:1999;68-72.
20. Greely H.T. Iceland's plan for genomics research: facts and implications. Jurimetrics. 40:2000;153-191.
21. Palsson G., Rabinow P. The Icelandic genome debate. Trends Biotechnol. 19:2001;166-171.
22. Fienberg S.E. Sharing statistical data in the biomedical and health sciences: ethical, institutional, legal and professional dimensions. Annu. Rev. Public Health. 15:1994;1-18.
23. Moore A. The key is in the genes, or is it...? EMBO Rep. 1:2000;100-102.