Advocacy and Compliance in Genetic Screening

Abstract

Abstract The relation between advocacy and compliance was evaluated in a voluntary testing program to identify carriers of the Tay—Sachs gene among 30,000 eligible subjects. The overall compliance rate was 9.8 per cent, and among subgroups of clients it was 27.6 per cent in final-year high-school students, 20 per cent in college students, 10.8 per cent in newlyweds, and 8.1 per cent in "random" eligible adults. Poor specific knowledge and lack of motivation, despite equivalent exposure to the screening option, greatly influenced the nonparticipant group by comparison with compliant subjects. The physician is the most powerful potential advocate of testing, for the Tay—Sachs gene, but he performs poorly in this role. Compliance rates can be improved in the program when its advocates are well informed and motivated. Our findings indicate a need for improved perception of the personal relevance of heredity, not only among clients of genetic screening programs but also among the personnel who function as advocates. (N Engl J Med 291:1166–1170, 1974)