Genetic justice must track genetic complexity

Cambridge Quarterly of Healthcare Ethics

Volumn 17, Issue 1, 2008, Pages 45-53

  Farrelly, Colin ^a  

^a UNIVERSITY OF WATERLOO   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

BIOETHICS; ETHICAL THEORY; GENE; GENETIC DISORDER; GENETICS; HEALTH CARE POLICY; HUMAN; REVIEW; SOCIAL JUSTICE; STANDARD;

BIOETHICAL ISSUES; ETHICAL THEORY; GENES; GENETIC DISEASES, INBORN; GENETICS; HEALTH POLICY; HUMANS; SOCIAL JUSTICE;

EID: 37349023408     PISSN: 09631801     EISSN: 14692147     Source Type: Journal    
DOI: 10.1017/S0963180108080055     Document Type: Review

References (26)

1. Watson J. A Passion for DNA: Genes, Genomes and Society. Oxford: Oxford University Press; 2000:169.
2. Rawls J. A Theory of Justice. Cambridge, Mass.: Harvard University Press; 1971.
3. Childs B. Genetic Medicine: A Logic of Disease. Baltimore, Md.: Johns Hopkins University Press; 2003.
4. Taken from Journal of Gene Medicine clinical trial site. Available from: URL: http://www.wiley.co.uk/genmed/clinical/.
5. Wilson J. Editorial. Human Gene Therapy 2005;16:1014.
6. Buchanan A, Brock D, Daniels N, Wikler D. From Chance to Choice: Genetics and Justice. Cambridge: Cambridge University Press; 2000:101. The authors argue that two central conclusions should guide public policy choices in the age of genetic intervention. The first is that there is a principled presumption that genetic intervention to prevent or ameliorate serious limitations due to disease is a requirement of justice. And, second, that justice may require regulating conditions of access to genetic enhancements to prevent exacerbations of existing unjust inequalities.
7. Lindsay R. Enhancements and justice: Problems in determining the requirements of justice in the genetically transformed society. Kennedy Institute of Ethics Journal 2005;15(1):3-38 at p. 5.
8. Alper J. Genetic complexity in human disease and behaviour. In Alper J, Ard C, Asch A, Beckwith J, Conrad P, Geller L. The Double-Edged Helix: Social Implications of Genetics in a Diverse Society. Baltimore, Md.: The Johns Hopkins University Press; 2002:22.
9. Parfit D. Equality or priority? In: Clayton M, Williams A, eds. The Ideal of Equality. Basingstoke, UK: Palgrave, Macmillan; 2000:101.
10. However, race and gender do influence our susceptibility to certain genetic diseases. For example, African Americans are more susceptible to Sickle Cell Disease. It affects approximately 1 in every 375 African Americans. Tay-Sachs Disease is most prevalent among Jews of Eastern European descent and French-Canadians and Cajuns in Louisiana. The incidence rate of Fragile X Syndrome is much higher in boys (1 in 2000) than in girls, and the effects are typically milder for girls.
11. Genetic Disease Information-Pronto! Available from: URL: http://www.ornl.gov/sci/techresources/Human_Genome/medicine/assist.shtml.
12. See note 8, Alper 2002:20.
13. See American Heart Association home page. Available from: URL: http://www.americanheart.org/.
14. The distinction between ideal and nonideal theory is not given rigorous classification in the existing literature. As Andrew Mason (Just constraints. British Journal of Political Science 2004;34:251-68 at 265) notes, this distinction is employed by John Rawls in The Law of Peoples. An account of justice in ideal theory must recognize "some moderately strong feasibility constraints which require it to be realistic in the best of foreseeable conditions" (Mason, 2004:265).
15. Rawls describes ideal theory as being realistically utopian. Political philosophy is realistically utopian "when it extends what are ordinarily thought of as limits of practical political possibility" (Rawls, The Law of Peoples. Cambridge, Mass.: Harvard University Press; 1999:6). This contrasts with nonideal theory, which is concerned with problems of noncompliance or unfavorable (historical, social, or economic) conditions. Nonideal theory is much more fact-sensitive than ideal theory.
16. Environmental interventions can even be pursued in the case of some single-gene disorders. The mental retardation caused by phenylketonuria (PKU), for example, can be prevented if the patient consumes a low-protein diet.
17. Connor JM, Ferguson-Smith MA. Essential Medical Genetics. Oxford: Blackwell Scientific Publications; 1984:190.
18. The genetically least advantaged are a subset of the more general category of individuals who are least advantaged in terms of their expected lifetime acquisition of natural primary goods. Other members of this category include those in serious accidents and those who fare poorly in terms of the acquisition of social primary goods (e.g., the malnourished).
19. Sickle Cell Disease. Available from: URL: http://www.ygyh.org/sickle/ whatisit.htm.
20. See note 8, Alper 2002:25-6.
21. Farrelly C. The genetic difference principle. American Journal of Bioethics 2004;4(2):W21-8.
22. Brock D. Broadening the bioethics agenda. Kennedy Institute of Ethics Journal 2000;10:21-38.
23. See Holmes S, Sunstein C. The Costs of Rights: Why Liberty Depends on Taxes. New York: W.W. Norton & Company; 1999, for a compelling argument against the cost-blind approach to rights.
24. Supporters of Rawls have attempted to rectify some of these shortcomings by adding healthcare to the list of things governed by the principle of fair equality of opportunity. See Daniels, N. Just Health Care. Cambridge: Cambridge University Press; 1985.
25. See my book Justice, Democracy and Reasonable Agreement, chapters 1 and 2. Basingstoke, UK: Palgrave MacMillan; 2007.
26. See Holm S. Bioethics down under - Medical ethics engages with political philosophy. Journal of Medical Ethics 2005;31(1):1.