Abstract:Targeting socially identifiable subpopulations for genetic screening entails the risk of stigmatizing them. The potential for such harm should be considered before programs are initiated. There is an emerging consensus that targeted subpopulations should be actively involved in evaluating these risks. A process of communal discourse engages the community in discussions that reflect both public and private sociocultural contexts in which individual decisions about screening will be made. This allows the subpopu… Show more
“…African Americans, Ashkenazi Jews), these results suggest racial targeting concerns may exist even among majority groups and that presenting tests as specific to one group may paradoxically reduce uptake across all groups. 33,53 …”
Purpose
As the potential role of genetic testing in disease prevention and management grows, so does concern about differences in uptake of genetic testing across social and racial groups. Characteristics of how genetic tests are delivered may influence willingness to undergo testing and, if they affect population subgroups differently, alter disparities in testing.
Methods
Conjoint analysis study of the effect of three characteristics of genetic test delivery (i.e. attributes) on willingness to undergo genetic testing for cancer risk. Data were collected using a random digit dialing survey of 128 African American and 209 White individuals living in the US. Measures included conjoint scenarios, the Revised Health Care System Distrust Scale (including the values and competence subscales), health insurance coverage, and sociodemographic characteristics. The three attributes studied were disclosure of test results to the health insurer, provision of the test by a specialist or primary care doctor, and race specific or race neutral marketing.
Results
In adjusted analyses, disclosure of test results to insurers, having to get the test from a specialist, and race specific marketing were all inversely associated with willingness to undergo the genetic test, with the greatest effect for the disclosure attribute. Racial differences in willingness to undergo testing were not statistically significant (p=0.07) and the effect of the attributes on willingness to undergo testing did not vary by patient race. However, the decrease in willingness to undergo testing with insurance disclosure was greater among individuals with high values distrust (p=0.03) and the decrease in willingness to undergo testing from specialist access was smaller among individuals with high competence distrust (p=0.03).
Conclusions
Several potentially modifiable characteristics of how genetic tests are delivered are associated with willingness to undergo testing. The effect of two of these characteristics vary according to the level of health care system distrust, suggesting that policy decisions about delivery of genetic testing may influence differences in uptake across patient subgroups defined by levels of distrust rather than by race.
“…African Americans, Ashkenazi Jews), these results suggest racial targeting concerns may exist even among majority groups and that presenting tests as specific to one group may paradoxically reduce uptake across all groups. 33,53 …”
Purpose
As the potential role of genetic testing in disease prevention and management grows, so does concern about differences in uptake of genetic testing across social and racial groups. Characteristics of how genetic tests are delivered may influence willingness to undergo testing and, if they affect population subgroups differently, alter disparities in testing.
Methods
Conjoint analysis study of the effect of three characteristics of genetic test delivery (i.e. attributes) on willingness to undergo genetic testing for cancer risk. Data were collected using a random digit dialing survey of 128 African American and 209 White individuals living in the US. Measures included conjoint scenarios, the Revised Health Care System Distrust Scale (including the values and competence subscales), health insurance coverage, and sociodemographic characteristics. The three attributes studied were disclosure of test results to the health insurer, provision of the test by a specialist or primary care doctor, and race specific or race neutral marketing.
Results
In adjusted analyses, disclosure of test results to insurers, having to get the test from a specialist, and race specific marketing were all inversely associated with willingness to undergo the genetic test, with the greatest effect for the disclosure attribute. Racial differences in willingness to undergo testing were not statistically significant (p=0.07) and the effect of the attributes on willingness to undergo testing did not vary by patient race. However, the decrease in willingness to undergo testing with insurance disclosure was greater among individuals with high values distrust (p=0.03) and the decrease in willingness to undergo testing from specialist access was smaller among individuals with high competence distrust (p=0.03).
Conclusions
Several potentially modifiable characteristics of how genetic tests are delivered are associated with willingness to undergo testing. The effect of two of these characteristics vary according to the level of health care system distrust, suggesting that policy decisions about delivery of genetic testing may influence differences in uptake across patient subgroups defined by levels of distrust rather than by race.
“…Potential consumers of genetic services, especially those consumers who are affected by genetic conditions, may provide useful guidance about any of these policy issues. [31][32][33] The role of community concerns in genetics research. The notion that community perspectives should be given special attention in genetics research is the result of research findings within the last decade.…”
Section: Including Public Perspectives In Genetics Policymentioning
“…Understanding the cultural and ethnic import of sensitive information about inheritance can also improve communication about genetic risk to minority and traditionally underserved populations (Foster, Eisenbraun, & Carter, 1997–1998). Genetic research on human variation is also likely to stir emotions about genetic inclusion or exclusion among members of racial and ethnic groups.…”
Section: New Roles: What Can Psychologists Do In the Genetic Revolution?mentioning
Advances in genetics and genetic testing promise to catalyze a fundamental change in the practice of medicine. Psychologists have much to offer as psychotherapists, researchers, educators, and policymakers to a society heavily influenced by the genetic revolution. To make the most of new opportunities available to mental health professionals in genetics, psychologists must know basic genetic principles and learn what is new about 21st-century genetics. The core competencies for all health professionals developed by the National Coalition for Health Professional Education in Genetics are related in this article to the significant roles psychologists can play in helping individuals with genetic concerns to cope with vulnerability, optimize family interaction, and improve health behaviors.
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