Genetic testing and early diagnosis and intervention: Boon or burden?

Journal of Medical Ethics

Volumn 22, Issue 2, 1996, Pages 105-110

  Hepburn, Elizabeth R ^a  

^a Queensland Bioethics Centre   (Australia)

Author keywords

Ethics; Genetic screening; Prenatal diagnosis

Indexed keywords

ARTICLE; EARLY DIAGNOSIS; GENETIC COUNSELING; GENETIC DISORDER; GENETIC SCREENING; HUMAN; MEDICAL ETHICS;

EID: 0029926893     PISSN: 03066800     EISSN: None     Source Type: Journal    
DOI: 10.1136/jme.22.2.105     Document Type: Article

References (23)

1. The terms "baby", "child", and "fetus" may all be used of the one entity. The function of technical language is to create distance. I think it is helpful to retain the relational language, of "child" and "baby", in determining how best we can deal with conflicts of interest when they arise. It also underscores my own view that the fetus is due the protection owed to a person and that the fetus is best regarded as a person and a patient.
2. It also raises questions about the rights of parents to seek modification of the genotype to enhance capacities. Here, I deal only with issues associated with the use of prenatal testing for disabilities.
3. Wilson J, Junger G. Principles and practice of screening for disease. Geneva: World Health Organisation, public health papers No 34, 1968.
4. Arendt H cited by Hubbard R. Eugenics: new tools, old ideas. In: Baruch EH, D'Adamo AF, Seager J, eds. Embryos, ethics and women's rights. New York: Harrington Press, 1988: 225-36.
5. Rothman B. Reproductive technology and the commodification of life. In: Baruch EH, D'Adamo AF, Seager J, eds. Embryos, ethics and women's rights. New York: Harrington Press, 1988: 95-100.
6. Fletcher JC. Ethical issues in genetic screening and antenatal diagnosis. Clinical Obstetrics and Gynecology 1981; 24: 1151-68.
7. It should be noted that the majority of jurisdictions do not at present recognise the right of a child to complain about having been born. Shaw M. The potential plaintiff: preconception and prenatal torts. In: Milunsky A, Annas GJ, eds. Genetics and the law II. New York: Plenum, 1980: 225-32.
8. Dickens B. Wrongful birth and life, wrongful death before birth and wrongful law. In: McLean SAM, ed. Legal issues in human reproduction, Aldershot: Gower, 1989: 80-112.
9. Hubbard R. Eugenics: new tools, old ideas. See reference 6: 225-36.
10. Daniels CR. At women's expense. Cambridge, MA: Harvard University Press, 1993.
11. Noonan JT. An almost absolute value in history. In: Noonan JT, ed. The morality of abortion. Cambridge, MA: Harvard University Press, 1970.
12. Meador CK. The last well person. New England Journal of Medicine 1994; 330: 440-1.
13. This gene had not been identified when the report was prepared so these possibilities were not considered.
14. PKU is inherited through two recessive genes, one from each parent.
15. Similar points could be made with respect to a screening programme for Rh-negative factor in maternal blood. Testing is routine. Treatment is straightforward (either, immunisation of Rh-negative mothers or exchange transfusion of blood for the baby) and effective, if undertaken in utero or in the first few hours of life.
16. Batt S. Patient no more. Charlottetown, Prince Edward Island: Gynergy, 1994.
17. Figures vary, 80 per cent is an estimate only. Ford D, Easton DF, Bishop DT, Narod SA, Goldgar DE. Risks of cancer in BRCA1-mutation carriers. Lancet 1994; 343: 692-6, indicates 87 per cent penetrance of the breast cancer gene by age 70. Easton D. Breast-ovarian cancer families and the BRCA1 gene. Lancet 1994; 343: 711, indicates carriers have a 50 per cent risk of breast cancer by age 50, 70 per cent by age 70. Easton DF, Bishop DT, Ford D, Crockford GP. Genetic linkage analysis in familial breast and ovarian cancer: results from 214 families. American Journal of Human Genetics 1993; 52: 678-701 indicates carriers have a cumulative risk of 59 per cent by age 50, 82 per cent by 70.
18. Figures vary, 80 per cent is an estimate only. Ford D, Easton DF, Bishop DT, Narod SA, Goldgar DE. Risks of cancer in BRCA1-mutation carriers. Lancet 1994; 343: 692-6, indicates 87 per cent penetrance of the breast cancer gene by age 70. Easton D. Breast-ovarian cancer families and the BRCA1 gene. Lancet 1994; 343: 711, indicates carriers have a 50 per cent risk of breast cancer by age 50, 70 per cent by age 70. Easton DF, Bishop DT, Ford D, Crockford GP. Genetic linkage analysis in familial breast and ovarian cancer: results from 214 families. American Journal of Human Genetics 1993; 52: 678-701 indicates carriers have a cumulative risk of 59 per cent by age 50, 82 per cent by 70.
19. Figures vary, 80 per cent is an estimate only. Ford D, Easton DF, Bishop DT, Narod SA, Goldgar DE. Risks of cancer in BRCA1-mutation carriers. Lancet 1994; 343: 692-6, indicates 87 per cent penetrance of the breast cancer gene by age 70. Easton D. Breast-ovarian cancer families and the BRCA1 gene. Lancet 1994; 343: 711, indicates carriers have a 50 per cent risk of breast cancer by age 50, 70 per cent by age 70. Easton DF, Bishop DT, Ford D, Crockford GP. Genetic linkage analysis in familial breast and ovarian cancer: results from 214 families. American Journal of Human Genetics 1993; 52: 678-701 indicates carriers have a cumulative risk of 59 per cent by age 50, 82 per cent by 70.
20. Zeesman S, Clow C, Cartier L, Scriber C. A private view of heterozygosity: eight year follow-up study on carriers of the Tay-Sachs gene detected by high school screening in Montreal. American Journal of Human Genetics 1984; 18: 769-78.
21. The technical capacity to enhance human genotypes is not currently available.
22. See Leary V. The right to health in international human rights law. Health and Human Rights 1994; 1: 24-57.
23. Shilts R. And the band played on. New York: Bantam, 1988.