Advances in Chronic Kidney Disease
Volume 13, Issue 2 , Pages 178-182 , April 2006

Policy Implications of Genetic Testing: Not Just for Geneticists Anymore

  • Gail H. Javitt

      Affiliations

    • Corresponding Author InformationAddress Correspondence to Gail H. Javitt, JD, MPH, Bioethics Institute, Washington Campus, Johns Hopkins University, 1717 Massachusetts Avenue, NW 530, Washington, DC 20036.

References 

  1. Baruch S , Javitt G , Scott J , et al.   Reproductive Genetic Testing (Issues and Options for Policymakers) . Washington, DC: Genetics and Public Policy Center; 2004;
  2. GeneTests, www.genetests.com
  3. Lindpaintner K . Pharmacogenetics and pharmacogenomics in drug discovery and development (An overview) . Clin Chem Lab Med . 2003;41:398–410
  4. Clinical Laboratory Improvement Amendments of 1988. United States Code, Title 42, Section 263a.
  5. In:  Holtzman NA ,  Watson MS editor. Promoting Safe and Effective Genetic Testing in the United States (Final Report of the Task Force on Genetic Testing) . 1997; available at www.genome.gov/10001733.
  6. Enhancing the Oversight of Genetic Tests (Recommendations of the SACGT) . 2000; available at http://www4.od.nih.gov/oba/sacgt/reports/oversight_report.pdf.
  7. Centers for Disease Control . Notice of intent (Genetic testing under the clinical laboratory improvement amendments) . Fed Regist . 2000;65:25928–25934
  8. Javitt G , Stanley E , Hudson K . Direct-to-consumer genetic tests, government oversight, and the first amendment (What the government can (and can’t) do to protect the public’s health) . Okla Law Rev . 2004;57:251–302
  9. Gollust SE , Wilfond BS , Hull SC . Direct-to-consumer sales of genetic services on the Internet . Genet Med . 2003;5:332–337
  10. Gollust SE , Hull SC , Wilfond BS . Limitations of direct-to-consumer advertising for clinical genetic testing . JAMA . 2002;288:1762–1767
  11. Hull SC , Prasad P . Reading between the lines (Direct-to-consumer advertising of genetic testing) . Hastings Cent Rep . 2001;31:33–35
  12. Williams-Jones B . Where there’s a Web, there’s a way (Commercial genetic testing and the Internet) . Community Genet . 2003;6:46–57
  13. American College of Medical Genetics Board of Directors . ACMG statement on direct-to-consumer genetic testing . Genet Med . 2004;6:60
  14. United States Code, Title 15, Section 45(a)
  15. FTC Policy Statement Regarding Advertising Substantiation . 1984; Available at www.ftc.gov/bcp/guides/ad3subst.htm. Last accessed June 15, 2005.
  16. Testimony of Matthew Daynard before the Secretary’s Advisory Committee on Genetics Health and Society . 2003; October 22-23. Available at www4.od.nih.gov/oba/SACGHS/meetings/October2003/Daynard_tr.pdf. Last accessed June 15, 2005.
  17. Testimony of Matthew Daynard before the Secretary’s Advisory Committee on Genetics Health and Society . 2005; June 15. Available at http://www4.od.nih.gov/oba/SACGHS/meetings/June2005/SACGHSJun2005postmeeting.htm.
  18. Schulze M . 25 percent more states allow direct access testing . Lab Med . 2001;32:661–664
  19. Giardiello FM , Brensinger JD , Peterson GM , et al.   The use and interpretation of commercial APC gene testing for familial adenomatous polyposis . N Engl J Med . 1997;336:823–827
  20. Baars M , Henneman L , ten Kate L . Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians (A global problem) . Genet Med . 2005;7:605–610
  21. Kalfoglou A , Suthers K , Scott J , Hudson K . Reproductive Genetic Testing (What America Thinks) . Washington, DC: Genetics and Public Policy Center; 2004;
  22. EEOC v. Burlington N. Santa Fe Ry. Co., No.02-C-0456 (E.D. Wis. 2002)
  23. http://www.nationalpartnership.org/portals/p3/library/GeneticDiscrimination/FacesofGeneticDiscrimination.pdf.
  24. Apse KA , Biesecker BB , Giardiello FM , et al.   Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients . Genet Med . 2004;6:510–516
  25. http://www.law.umaryland.edu/marshall/crsreports/crsdocuments/RL3000602232005.pdf
  26. An Analysis of the Adequacy of Current Law in Protecting Against Genetic Discrimination in Health Insurance and Employment . A Report Commissioned by the Secretary’s Advisory Committee on Genetics, Health, and Society . 2005; May
  27. Public Law No. 101-336
  28. http://www.eeoc.gov/policy/docs/902cm.html
  29. Public Law No. 104-191
  30. http://www.genome.gov/10002328
  31. S. 306, the Genetic Information Nondiscrimination Act of 2005

PII: S1548-5595(06)00004-8

doi: 10.1053/j.ackd.2006.01.003

Advances in Chronic Kidney Disease
Volume 13, Issue 2 , Pages 178-182 , April 2006

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