Predictive testing for HD: maximizing patient autonomy.

Abstract

In "The Ethical Justification for Minimal Paternalism in the Use of the Predictive Test for Huntington's Disease," David DeGrazia attempts to provide a rational analysis of the exclusion criteria and counseling requirements for predictive testing proposed by the Huntington's Disease Society of America (HDSA). The need for analysis is clear. These protocols and procedures for predictive testing for Huntington's disease (HD) are being used as models for testing programs for any number of genetic conditions. DeGrazia concludes that the HDSA guidelines are reasonable, a conclusion with which I agree. However, I believe that DeGrazia, by placing his analysis within the framework of autonomy versus paternalism, overlooks both the fundamental rationale for the testing procedures and the true barriers to testing.... The difficulties encountered during the testing process clearly demonstrated the failure of abstract principles to deal with real life.