The genetics community has developed guidelines recommending that predictive testing of children …

• Abstract
• Predictive Testing of Children for Adult-Onset Genetic Conditions
• Problems with the Reigning View
• Affective Forecasting, Durability Bias, and Focalism
• Conclusion
• References

Biology Articles » Genetics » Why Test Children for Adult-Onset Genetic Diseases? » References

References

- Why Test Children for Adult-Onset Genetic Diseases?

1. Harper PS, Clarke A. Should we test children for “adult” genetic diseases? Lancet 1990; 335:1205 – 1206.

2. Working Party of the Clinical Genetics Society (UK). The genetic testing of children. J Med Genet 1994; 31:785 – 797.

3. American Society of Human Genetics/American Council of Medical Genetics (US) report. Points to consider: ethical, legal and psychological implications of genetic testing in children and adolescents. Am J Hum Genet 1995; 57:1233 – 1241.

4. Cohen CB. Moving away from the Huntington’s disease paradigm in the predictive genetic testing of children. In: Clarke AJ, editor. The genetic testing of children. Oxford (UK): BIOS Scientific Publishers; 1998.

5. Cohen CB. Wrestling with the future: should we test children for adult-onset genetic conditions? Kennedy Inst Ethics J 1998; 8(2):111 – 130.

6. Robertson S, Savulescu J. Is there a case in favour of predictive genetic testing in young children? Bioethics 2001; 15(1):26 – 49.

7. Binedell J, Soldan JR, Scourfield J, Harper PS. Huntington’s disease predictive testing: the case for an assessment approach to requests from adolescents. J Med Genet 1996; 33(11):912 – 918.

8. Dickenson DL. Can children and young people consent to be tested for adult onset genetic disorders? BMJ 1999; 318:1063 – 1066.

9. Harper PS, Glew R, Harper R. Response to requests for genetic testing is not based on age alone. BMJ 1999; 319(7209):578.

10. Advisory Committee on Genetic Testing: Report on genetic testing for late onset disorders. Department of Health, London, Jan 13, 1999.

11. Pelias MZ, Markward NJ. The Human Genome Project and public perception: truth and consequences. Emory Law J 2000; 49(3):837 – 858.

12. Duncan RE, Savulescu J, Gillam L, et al. An international survey of predictive genetic testing in children for adult onset conditions. Gen Med 2005; 7(6):390 – 396.

13. American Academy of Pediatrics, Committee on Bioethics. Position Statement, Ethical issues with genetic testing in pediatrics. Pediatrics 2001; 107(6):1451 – 1455. [Reaffirmed by the AAP, May 2005.]

14. Rhodes R, Holzman IR. The not unreasonable standard for assessment of surrogates and surrogate decisions. Theor Med Bioeth 2004; 25(4):367 – 385.

15. Broadstock M, Michie S, Marteau T. Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet 2000; 8(10):731 – 738.

16. Gooding HC, Organista K, Burack J, Biesecker BB. Genetic susceptibility testing from a stress and coping perspective. Soc Sci Med 2005 Sep 27. (Epub ahead of print.)

17. Bentham J. An introduction to the principles of morals and legislation. Edited by Burns JH, Hart HLA. New York: Oxford University Press; 1996.

18. Wilson TD, Schooler JW. Thinking too much: introspection can reduce the quality of preferences and decisions. J Pers Soc Psychol 1991; 60(2):181 – 192.

19. Wilson TD, Brekke N. Mental contamination and mental correction: unwanted influences on judgments and evaluations. Psychol Bull 1994; 116(1):117 – 142.

20. Wilson TD, Wheatley T, Meyers JM, et al. Focalism: a source of durability bias in affective forecasting. J Pers Soc Psychol 2000; 78(5):821 – 836.

21. Gilbert DT, Ebert JEJ. Decisions and revisions: the affective forecasting of changeable outcomes. J Pers Soc Psychol 2002; 82(4):503 – 514.

22. Gilbert DT, Brown RP, Pinel EC, Wilson TD. The illusion of external agency. J Pers Soc Psychol 2000; 79(5):690 – 700.

23. McWhinnie AM. Adopted children: how they grow up. London: Routledge & Kegan Paul; 1967.

24. McWhinnie AM. Annex: the case for greater openness concerning AID. In: AID and After: Papers from BAAF, BASW and a Scottish Working Party. London: British Agencies for Adoption and Fostering; 1984.

25. MacIntyre JC 2nd, Donovan DM. Resolved: children should be told of their adoption before they ask. J Am Acad Child Adolesc Psychiatry 1990; 29(5):828 – 833.

26. Baran A, Pannor R. Lethal secrets. New York: Warner Books; 1989.

27. Borchers D; American Academy of Pediatrics, Committee on Early Childhood, Adoption and Dependent Care. Families and adoption: the pediatrician’s role in supporting communication. Pediatrics 2003; 112(6):1437 – 1441.

28. American Academy of Pediatrics, Committee on Pediatric AIDS, Policy Statement, Disclosure of illness status to children and adolescents with HIV infection. Pediatrics 1999; 103(1):164 – 166.

29. American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 2000; 106(2 Pt 2):351 – 357.

30. McGee G, Brakman SV, Gurmakin AD. Gamete donation anonymity: disclosure to children conceived with donor gametes should not be optional. Hum Reprod 2001; 16(10):2033 – 2036.

31. Haimes E. “Secrecy”: what can artificial reproduction learn from adoption? Int J Law Fam 1998; 2:46 – 61.