To understand this debate, one needs some background on the history of carrier testing in the United States, a history with two strikingly different testing experiences, both of which are influencing plans for CF testing.
The first experience dates to the early 1970s, when about a dozen states enacted poorly conceived laws that mandated testing blacks for sickle cell trait. The testing programs usually targeted black school children or black couples seeking marriage licenses.
These laws paid little, if any, attention to the importance of providing genetic counseling services, to protecting the privacy of the test results, to the problem of the inadvertent discovery of nonpaternity, and to other sensitive issues. As a result, they drew sharp criticism, which, in turn, helped to stimulate enactment of a federal law that offered matching funds for sickle cell testing programs to those states that embraced voluntarism, respected privacy, and provided counseling.
The ...
