Issues of Justice

The idea of difference implies hierarchy. Genetic testing is conducted to find and define the metric of difference from an agreed-upon norm. Critics of genetic testing raise two problems: first, that the idea of testing can be used unfairly as a basis for allocation of scarce goods, such as admission to competitive institutions or privileged social locations (jobs, professional schools, university); second, the very idea of a norm is an invalid one, and one that creates and reifies social hierarchies that destabilize democracy.

One new bioethical argument has been raised by disability advocates. They argue that genetic tests are an imperfect way of understanding humanity. Genetic testing, which notes allelic variation, can point to difference but is not sensitive to how the differences will express in any one human body, nor any one human circumstance or exposure. Further, genetic testing can alert one to differences but cannot alter the genome of the person tested. Used in the context of a prenatal test, each parent must decide if the pregnancy should proceed or if the different genetic code and its attendant disease will create a child with a disability so profound that such a child would be better off having never lived. Then, argue advocates for the disabled, if such a child's life is considered too burdensome, will such a judgment be fatally linked to disabled persons already born? Since at this point only the person and not the genetic disease can be eliminated, will this have implications for the moral status of the disabled community?

A second troubling aspect of a widening use of genetic knowledge lies at the other end of the possible curve of genetic endowment and the notion of the normal. If researchers could intervene to alter disease-causing genes, might science not go further to enhance traits labeled as desirable? Justice issues arise not only in the classic distributive sense—wealthy individuals and classes of individuals will have a unique access to the first uses of enhancements— but also in the deeper sense that genetic science might disrupt the social compact by introducing such different abilities.

The final issue of justice asks a different genre of question: Will increased genetic knowledge and use of genetic information and interpretation allow for healthcare that is more or less just? There are at least two possible responses. First, as noted above, enhancement or differential access to genetics could deepen differences, particularly if such changes are heritable, allowing a persistent benefit across multiple generations. But the very quality of genetics that allows for wide applicability may well mean that genetic methods could be both widely available and less beholden. Chronic conditions that could be cured would mean that certain types of drug therapies would not be needed. Justice, argue Alan Buchanan, Daniel Brock, and Norman Daniels (2000), becomes a matter of making just choices rather than adjudicating and adjusting the unfairness of a genetic lottery. Many critical aspects of the problem of justice are not different in meaning from other types of sophisticated, highly technological medical interventions such as organ transplants, chemotherapy, or implantable cardioversion devices, which allow for similarly vast differences between persons, countries, and healthcare system membership. Genetic medicine can seem to be paradoxically more unjust precisely because it has the potential to become far more widespread in application, and because of its heritable character.

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