IMPACT OF SOCIAL FACTORS ON ALPHA-1 ANTITRYPSIN TESTING

Abstract

Targeted testing programs are identifying increasing numbers of adults affected by Alpha-1 Antitrypsin Deficiency (Alpha-1) who are making decisions about genetic testing for their at-risk children. Although there are possible benefits, there are also potential risks. The purpose of this article was to explore attitudes toward testing at-risk children from the first hand perspective of those involved, identify the benefits and risks experienced therein, and compare the views of parents and adults tested as children . Parents expressed significantly higher likelihoods of possible risks and benefits following Alpha-1 testing than they actually experienced. Articles do not reveal serious harms from testing at-risk children. From the review data and ethical analysis it is recommendes that parents and children have relevant information prior to testing for Alpha-1 and that at risk children are directly involved in the decision-making process prior to testing.