Tay-Sachs screening: social and psychological impact

Abstract

Participants in two Tay-Sachs screening programs were generally satisifed with the organization of the tests and the results. There was no evidence of adverse impact on reproductive plans or interpersonal relations, and the respondents professed to believe in the value of screening. While the carriers discussed their condition freely with others and were no less favorable to the idea of screening than the noncarriers, about one-half of their number expressed discomfort in being told they were heterozygotes. These feelings were allayed by counseling, but there was evidence of some residual unease. It is suggested that this anxiety would be less prominent and more easily reduced if screening were done under conditions of ordinary primary medical care rather than outside the conventional system.

PIP: 2 studies (1 retrospective and 1 prospective) were conducted on participants in Tay-Sachs screening programs to assess the personal impact of the experience and their sense of fulfillment of the program's promise. All of the noncarriers felt relief on learning of the results of the test; 48.8% of the carriers and 42% of the carrier's spouses reported a sense of anxiety. 4 kinds of concern were expressed by the carriers and their spouses: 1) a sense of being "singled out" and having an imperfection, 2) dismay that children might inherit the gene, 3) anxiety which was allayed by instruction, and 4) distress in pregnant couples, eased by instruction. There was no evidence of adverse impact on reproductive plans or interpersonal relations. The participants professed to believe in the value of screening. While the carriers discussed their condition freely, 90% recommended premarital testing, 50% of those before the potential age of marriage. 94% of the participants said the program had lived up to their expectations. It is suggested that anxiety would be reduced if screening were conducted under conditions of ordinary primary medical care than outside the conventional system.