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Assessing Genetic Risks: Implications for Health and Social Policy
information and shift their focus to the implications of being at risk and the potential impact of what could occur. As Lippman-Hand and Fraser (1979a) point out, "the 'one' in the numerator never disappears no matter the size of the denominator, and the 'one' could be the counselee's child." Risk presentation and interpretation, therefore, are important in the decision-making process and are important components of the genetic counseling process.
These and other factors can also influence the results of studies of retention of risk information. In a study of 190 individuals from 100 families in which there is at least one person with autosomal dominant polycystic kidney disease (PKD), most tested poorly on questions reflecting their knowledge of the genetics of PKD (Hodgkinson et al., 1990). An analysis of nine studies on counseling published since 1970 concluded that "many parents of children with a genetic disorder have an inadequate understanding of the genetic implications of the disease, even after one or more genetic counseling sessions" (Evers-Kiebooms and van den Berghe, 1987). In one study, most (87 percent) who came for counseling with inaccurate knowledge of risk still had inaccurate knowledge after counseling, and some of those who came with accurate knowledge, had inaccurate knowledge after counseling (Sorenson et al., 1981). As described above, a number of factors undoubtedly influence understanding of risk and ability to report risk accurately. In the future, with an increase in the number of tests available to predict genetic disease and pressure to streamline the counseling process, those providing genetic counseling will find themselves facing even greater challenges in communicating risk.
Recognizing Social and Cultural Differences
Combined, the minority groups of Asian and Pacific Islanders, African-Americans, Hispanics, and Native Americans comprise nearly one-fourth of the U.S. population, increasing at a rate more than three times that of the total U.S. population (U.S. Bureau of the Census, 1988; U.S. Immigration and Naturalization Service, 1989). Projections for the year 2000 indicate that a majority of the U.S. population will be people of color (King, 1992); thus people who now comprise racial or ethnic minorities are sometimes referred to as the "emerging majority." The issue of cultural and racial variation in the receipt of genetic information poses additional challenges for those providing genetic counseling.
The sickle cell and Tay-Sachs carrier screening programs of the past provide valuable information on the importance of understanding the culture and values of the population being screened, and providing education and counseling tailored to that population, and of optimizing the settings in which screening occurs (see Chapters 1 and 2). Persons from different cultures, socioeconomic classes, and educational backgrounds may interpret and value the information provided through genetic testing and screening differently. This variability may be due to differences in people's views on reproduction and abortion, the role of children in the society, the significance of genetic disorders and diagnoses in terms of overall