The Journal of Pediatrics
Volume 149, Issue 1, Supplement , Pages S34-S38 , July 2006

Ethical issues arising from the participation of children in genetic research

  • Wylie Burke, MD, PhD

      Affiliations

    • Corresponding Author InformationReprint requests: Dr Wylie Burke, Department of Medical History and Ethics, University of Washington, Box 357120, 1959 NE Pacific, Room A204, Seattle, WA 98195-7120.
  • ,
  • Douglas S. Diekema, MD, MPH

References 

  1. Clark C. Blueprint of the Body. On the threshold of a rave new world. CNN.com. Available online at: http://www.cnn.com/SPECIALS/2000/genome/story/overview/. accessed September 26, 2005.
  2. Collins FS, quoted in International Consortium Completes Human Genome Project. National Human Genome Research Institute. Available online at: http://www.genome.gov/11006929. accessed September 26, 2005.
  3. Annas GJ , Glantz LH , Roche PA . Drafting the genetic privacy act (science, policy, and practical considerations) . J Law Med Ethics . 1995;23:360–366
  4. Nelkin D , Lindee M . The DNA Mystique (The Gene as a Cultural Icon) . New York: Freeman; 1995;
  5. University of Toronto. Researchers isolate gene for Crohn’s disease. Available online at: http://www.newsandevents.utoronto.ca/bin5/040412a.asp. accessed September 26, 2005.
  6. Geller G , Bernhardt BA , Holtzman NA . The media and public reaction to genetic research . JAMA . 2002;287:773
  7. Khoury MJ , Thrasher JF , Burke W , Gettig EA , Fridinger F , Jackson R . Challenges in communicating genetics (a public health approach) . Genet Med . 2000;2:198–202
  8. Murray TH . Genetic exceptionalism and “future diaries” (is genetic information different from other medical information?) . In:  Rothstien M editors. Genetic Secrets (Protecting Privacy and Confidentiality in the Genetic Era) . New Haven, CT: Yale University Press; 1997;
  9. Jeungst E . The ethics of prediction (genetic risk and the physician-patient relationship) . Genome Science Tech . 1995;1:21–36
  10. Comments by Dr. Francis S. Collins Regarding the Passage of Genetic Information Nondiscrimination Act of 2005 (S. 306). Available online at: http://www.genome.gov/pfv.cfm?pageid=13014311. accessed September 26, 2005.
  11. Relling MV , Hancock HL , Rivera GK , Sandlund JT , Ribeiro RC , Krynetski EY , et al.   Mercaptopurine therapy intolerance and heterozygosity at the thiopurine S-methyltransferase gene locus . JNCI . 1999;91:2001–2008
  12. Rocha JCC , Cheng C , Liu W , Kishi S , Das S , Cook EH , et al.   Pharmacogenetics of outcome in children with acute lymphoblastic leukemia . Blood . 2005;105:4752–4758
  13. Burke W . Genomics as probe for disease biology . New Engl J Med . 2003;349:969–974
  14. Beskow LM , Botkin JR , Daly M , Juengst ET , Lehmann LS , et al.   Ethical issues in identifying and recruiting participants for familial genetic research . Am J Med Genet . 2004;130A:424–431
  15. Parker LS . Ethical concerns in the research and treatment of complex disease . Trends Genet . 1995;11:520–523
  16. Arar NH , Hazuda H , Steinbach R , Arar MY , Abboud HE . Ethical issues associated with conducting genetic family studies of complex disease . Ann Epidemiol . 2005;15:712–719
  17. Ellsworth DL , Manolio TA . The emerging importance of genetics in epidemiologic research, I (basic concepts in human genetics and laboratory technology) . Ann Epidemiol . 1999;9:1–16
  18. Collins FS . The case for a US prospective cohort study of genes and environment . Nature . 2004;429:475–477
  19. Austin MA , Harding S , McElroy C . Genebanks (a comparison of eight proposed international genetic databases) . Commun Genet . 2003;6:37–45
  20. Austin MA , Harding SE , McElroy CE . Monitoring ethical, legal, and social issues in developing population genetic databases . Genet Med . 2003;5:451–457
  21. HHS Office for Human Research Protections Policy Guidance. Available online at: http://www.hhs.gov/ohrp/policy/. accessed September 26, 2005.
  22. Caulfield T , Upshur REG , Daar A . DNA databanks and consent (a suggested policy option involving an authorization model) . BMC Medical Ethics . 2003;4; Available online at: www.biomedcentral.com/1472-6939/4/1.
  23. Jopling MA , Gill P . Encoded evidence (DNA in forensic analysis) . Nat Rev Genet . 2004;5:739–751
  24. Campbell E , Ross LF . Attitudes of healthcare professionals and parents regarding genetic testing for violent traits in childhood . J Med Ethics . 2004;30:580–586
  25. Caspi A , McClay J , Moffitt TE , Mill J , Martin J , Craig IW , et al.   Role of genotype in the cycle of violence in maltreated children . Science . 2002;297:851–854
  26. Caspi A , Moffitt TE , Cannon M , McClay J , Murray R , Harrington H , et al.   Moderation of the effect of adolescent-onset cannabis use on adult psychosis by a functional polymorphism in the catechol-O-methyltransferase gene (longitudinal evidence of a gene X environment interaction) . Biol Psychiatry . 2005;57:1117–1127
  27. Tluczek A , Koscik RL , Farrell PM , Rock MJ . Psychosocial risk associated with newborn screening for cystic fibrosis (parents’ experience while awaiting the sweat-test appointment) . Pediatrics . 2005;115:1692–1703
  28. Kerruish NJ , Robertson SP . Newborn screening (new developments, new dilemmas) . J Med Ethics . 2005;31:393–398
  29. Wailoo K . Dying in the city of the blues (sickle cell anemia and the politics of race and health) . Chapel Hill: University of North Carolina Press; 2001;
  30. Image Archive on the American Eugenics Movement. Available online at: www.eugenicsarchive.org/eugenics/. accessed September 26, 2005.
  31. Cooper RS , Kaufman JS , Ward R . Race and genomics . N Engl J Med . 2003;348:1166–1170
  32. Fuller BP , Kahn MJE , Barr PA , Biesecker L , Crowley E , Garber J , et al.   Privacy in genetics research . Science . 1999;285:1359–1361
  33. National Bioethics Advisory Commission. Research involving human biological materials: ethical issues and policy guidance. Vol 1. Available online at: http://www.bioethics.gov/reports/past_commissions/nbac_biological1.pdf. accessed September 26, 2005.
  34. Quaid KA , Jessop NM , Meslin EM . Disclosure of genetic information obtained through research . Genet Test . 2004;8:347–355
  35. Beskow LM , Burke W , Merz JF , Barr PA , Terry S , Penchaszadeh V , et al.   Informed consent for population-based research involving genetics . JAMA . 2001;286:2315–2321
  36. ASHG/ACMG Report. Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents . Am J Hum Genet . 1995;57:1233–1241
  37. Neslon RM , Botkin JR , Kodish ED , Levetown M , Truman JT , Wilfond BS , et al.   Ethical issues with genetic testing in pediatrics . Pediatrics . 2001;107:1451–1455
  38. International HapMap Consortium. Integrating ethics and science in the international HapMap project . Nat Rev Genet . 2004;5:467–475
  39. Holtzman NA , Marteau TM . Will genetics revolutionize medicine? . N Engl J Med . 2000;343:141–144

 Supported in part by the University of Washington NHGRI sponsored Center for Genomics and Healthcare Equality Grant #: NHGRI P50HG03374.

PII: S0022-3476(06)00375-1

doi: 10.1016/j.jpeds.2006.04.049

The Journal of Pediatrics
Volume 149, Issue 1, Supplement , Pages S34-S38 , July 2006