Privacy issues in personalized medicine

Pharmacogenomics

Volumn 4, Issue 2, 2003, Pages 107-112

  Vaszar, Laszlo T ^a,b   Cho, Mildred K ^a   Raffin, Thomas A ^a  

^a STANFORD UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b VA PALO ALTO HEALTH CARE SYSTEM   (United States)

Author keywords

Biobanks; Bioethics; Bioinformatics; Confidentiality; Genome; Informed consent; Pharmacogenetics; Pharmacogenomics; Privacy

Indexed keywords

ARTICLE; BIOINFORMATICS; DRUG RESPONSE; GENETIC ANALYSIS; GENETIC DATABASE; GENETIC STABILITY; HUMAN; INDIVIDUALIZATION; MEDICAL ETHICS; MEDICAL INFORMATION; MEDICAL RECORD; MOLECULAR PHYLOGENY; PHARMACOGENOMICS; PRIVACY;

GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH;

EMPLOYMENT; GENETIC SCREENING; GENETIC TECHNIQUES; HUMANS; INFORMATION DISSEMINATION; INFORMED CONSENT; INSURANCE, HEALTH, REIMBURSEMENT; MEDICAL RECORDS; PHARMACOGENETICS; PHARMACOKINETICS; PRIVACY;

EID: 0037339191     PISSN: 14622416     EISSN: None     Source Type: Journal    
DOI: 10.1517/phgs.4.2.107.22625     Document Type: Article

References (36)

1. Spear BB, Heath-Chiozzi M, Huff J: Clinical application of pharmacogenetics. Trends Mol. Med. 7, 201-204 (2001).
2. Lazarou, J, Pomeranz BH, Corey PN: Incidence of adverse drug reactions in hospitalized patients: a meta-analysis of prospective studies. JAMA 279, 1200-1205 (1998).
3. Fremont-Smith K: Adverse drug reactions in hospitalized patients. JAMA 280, 1741; discussion 3-4 (1998).
4. Kravitz GR: Adverse drug reactions in hospitalized patients. JAMA 280, 1741; discussion 3-4 (1998).
5. Bates DW: Adverse drug reactions in hospitalized patients. JAMA 280, 1743-1744 (1998).
6. Lazarou J, Pomeranz BH, Corey PN: Adverse drug reactions in hospitalized patients. JAMA 280, 1743 (1998).
7. Bailey DS, Bondar A, Furness LM: Pharmacogenomics - it's not just pharmacogenetics. Curr. Opin. Biotech. 9, 595-601 (1998).
8. Evans WE, Relling MV: Pharmacogenomics: translating functional genomics into rational therapeutics. Science 286, 487-91 (1999).
9. Issa AM: Ethical considerations in clinical pharmacogenomics research. Trends Pharmacol. Sci. 21, 247-9 (2000).
10. Issa AM: Ethical perspectives on pharmacogenomic profiling in the drug development process. Nat. Rev. Drug Discov. 1, 300-308 (2002).
11. McCarthy JJ, Hilfiker R: The use of single-nucleotide polymorphism maps in pharmacogenomics. Nat. Biotechnol. 18, 505-508 (2000).
12. McLeod HL, Evans WE: Pharmacogenomics: unlocking the human genome for better drug therapy. Ann. Rev. Pharmacol. Toxicol. 41, 101-121 (2001).
13. National Bioethics Advisory Commission: Research Involving Human Biological Materials: Ethical Issues and Policy Guidance. Available at http://www.georgetown.edu/research/nrcbl/nbac/hbm_exec.pdf (1999). Last accessed on February 9, 2003.
14. Annas GJ: Privacy rules for DNA databanks. Protecting coded 'future diaries', JAMA 270, 2346-2350 (1993).
15. Annas GJ, Glantz LH, Roche PA: Drafting the Genetic Privacy Act: science, policy, and practical considerations. J. Law Med. Ethics 23, 360-366 (1995).
16. NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research: Genetic Information and Health Insurance. Report of the Task Force on Genetic Information and Insurance. Available at http://www.nhgri.nih.gov/About_NHGRI/Der/Elsi/itf.html (1993). Last accessed on February 9, 2003.
17. Murray TH: Genetic exceptionalism and 'Future Diaries': is genetic information different from other medical information? In: Genetic Secrets. Protecting Privacy and Confidentiality in the Genetic Era. MA Rothstein (Ed.), Yale University Press, 60-73 (1997).
18. Vaszar LT, Rosen GD, Raffin TA: Pharmacogenomics and the challenge to privacy. Pharmacogenomics J. 2, 144-147 (2002).
19. Weir RF, Horton JR: DNA banking and informed consent - part 1. IRB 17, 1-4 (1995).
20. Weir RF, Horton JR: DNA banking and informed consent - part 2. IRB 17, 1-8 (1995).
21. Annas GJ: Reforming informed consent to genetic research. JAMA 286, 2326-2328 (2001).
22. March R, Cheeseman K, Doherty M: Pharmacogenetics - legal, ethical and regulatory considerations. Pharmacogenomics 2, 317-327 (2001).
23. Swedish Medical Research Council: Research ethics guidelines for using biobanks, especially projects involving genome research. Available at http://www.vr.se (1999). Last accessed on December 22, 2002.
24. Beskow LM, Burke W, Merz JF et al.: Informed consent for population-based research involving genetics. JAMA 286, 2315-2321 (2001).
25. Sweeney L: Weaving technology and policy together to maintain confidentiality. J. Law Med. Ethics 25, 98-110 (1997).
26. Klein TE, Chang JT. Cho MK et al.: Integrating genotype and phenotype information: an overview of the PharmGKB project. Pharmacogenomics J. 1, 167-170 (2001).
27. Sweeney L: Datafly: a system for providing anonymity in medical data. In: Database Security XI. T Lin, S Qian (Eds) (1998).
28. Malin B, Sweeney L: Determining the identifiability of DNA database entries. Proceedings/AMIA Annual Symposium 537-541 (2000).
29. Malin B, Sweeney L: Re-identification of DNA through an automated linkage process. Proceedings/AMIA Annual Symposium 423-427 (2001).
30. McConnell LM, Koenig BA, Greely HT, Raffin TA: Genetic testing and Alzheimer's disease: has the time come? Alzheimer's disease Working Group of the Stanford Program in Genomics, Ethics & Society. Nat. Med. 4, 757-759 (1998).
31. Wachbroit R: The question not asked: the challenge of pleiotropic genetic tests. Kennedy Inst. Ethics J. 8, 131-144 (1998).
32. Jeffords JM, Daschle T: Political issues in the genome era. Science 291, 1249-1251 (2001).
33. Schafer S: Railroad Agrees to Stop Gene-Testing Workers. Washington Post E01 (April 19, 2001).
34. Robertson JA: Consent and privacy in pharmacogenetic testing. Nat. Genet. 28, 207-209 (2001).
35. Rothstein MA, Epps PG: Ethical and legal implications of pharmacogenomics. Nat. Rev. Genet. 2, 228-231 (2001).
36. Anderlik MR, Rothstein MA: Privacy and confidentiality of genetic information: what rules for the new science? Ann. Rev. Genomics Hum. Genet. 2, 401-433 (2001).