visit. Sorenson et al.1049 prospectively studied 2,220 counselees who were seen by 205 professionals in 47 clinics located in 25 states and the District of Columbia. They gathered information not only on the counselees but also on the counselors and the clinics in which genetic counseling was provided. They, too, documented that 53 percent of counselees did not comprehend their risks later, while 40 percent of the counselees given a specific diagnosis did not appear to know it after their counseling. They thoroughly explored the multiple and complex issues that potentially contributed to the obvious educational failure that they (and others) have observed. In another study of parents with a Down syndrome child, Swerts1050 noted that of those who had genetic counseling, 45 percent recalled recurrence risks accurately, 21 percent were incorrect, and 34 percent did not remember their risks.
In considering the effectiveness of genetic counseling, Sorenson et al.1049 summarized the essence of their conclusion:
In many respects, an overall assessment of the effectiveness of counseling, at least the counseling we assessed in this study, is confronted with the problem of whether the glass is half full or half empty. That is, about half of the clients who could have learned their risk did but about half did not. And, over half of the clients who could have learned their diagnosis did but the remainder did not. In a similar vein, clients report that just over half of their genetic medical questions and concerns were discussed, but about half were not. The picture for socio‐medical concerns and questions was markedly worse, however. And, reproductively, just over half of those coming to counseling to obtain information to use in making their reproductive plans reported counseling influenced these plans, but about half did not. Any overall assessment must point to the fact that counseling has been effective for many clients, but ineffective for an almost equal number.
A critical analysis of the literature by Kessler1051 concluded that published studies on reproductive outcome after genetic counseling revealed no major impact of counseling. Moreover, decisions made before counseling largely determined reproduction after counseling.
A study of patients' expectations of genetic counseling revealed that the majority had their expectations fulfilled, especially with perceived personal control.1052 When patients' expectations for reassurance and advice were met, they were subsequently less concerned and had less anxiety when compared with such expectations that were not fulfilled, similar to the Netherlands report.1043
The limited efficacy of genetic counseling revealed in the study by Sorenson et al.1049 reflects the consequences of multiple factors, not the least of which were a poor lay understanding of science.1036 Efficacy, of course, is not solely related to counselee satisfaction. Efforts to educate the public about the importance of genetics in their personal lives have been made by one of us in a series of books (one translated into nine languages) over 50 years.184, 331, 335, 337, 338, 1053 In addition to public education and its concomitant effect of educating physicians generally, formal specialist certification in the United States, Canada, the United Kingdom, and elsewhere, acceptance of clinical genetics as a specialty, and degree programs for genetic counselors certified by the National Board of Genetic Counselors, has undoubtedly improved the efficacy of genetic counseling. There remains, however, a pressing need to better educate practicing physicians about the “new genetics”184, 185, 199, 1054, 1055 in this, the golden era of human genetics.
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