Understanding Disparities in Access to Genomic Medicine Proceedings of a Workshop (2018) / Chapter Skim
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5 Exploring Innovative Solutions and Models of Success
5 Exploring Innovative Solutions and Models of Success
Pages 47-60
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From page 47... ...
(Schwartz) • Genetic counselors can maximize the effectiveness of commu nication with patients by limiting the delivery of information, assessing patient comprehension, and guiding patients through decision-making processes.
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From page 48... ...
Marc Schwartz, a professor of oncology, a co-director of the cancer prevention and control program, and the research director at Georgetown University's Fisher Center for Hereditary Cancer and Clinical Genomics Research, discussed alternative approaches to delivering genomic services, such as telemedicine. Rena Pasick, a professor in the department of medicine and the director of the office of community engagement at the University of California, San Francisco, Helen Diller Family Compre hensive Cancer Center, described her research on effective communication in genetic counseling for underserved populations.
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From page 49... ...
ALTERNATIVE MODELS OF CLINICAL SERVICE DELIVERY AND THE IMPACT OF DISPARITIES IN BRCA TESTING Marc Schwartz said that there are several reasons why he and his colleagues have been trying to develop and evaluate alternative approaches to genomic services, particularly for hereditary breast and ovarian cancers (HBOCs)
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From page 50... ...
The results showed that telephone delivery was no less effective than standard delivery, Schwartz said. However, in a separate analysis looking at the uptake of genetic testing following counseling, he and his colleagues observed that minority participants were substantially less likely than non-minority participants to complete genetic testing following telephone counseling than following standard delivery.
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From page 51... ...
Other studies are adapting the telephone counseling intervention for use in a Latino population, and some are using an intelligent tutoring system intervention that emulates one-toone in person tutoring and emphasizes risk messages to enhance genetic risk assessment in underserved African Americans and Latinas for breast cancer. Schwartz's colleagues have received funding for a 5-year training program for 250 community health educators, navigators, and promotors to develop a cohort that can refer high-risk Latinas to genetic services.
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From page 52... ...
Nearly 40 percent of the women who were offered the immediate appointment obtained genetic counseling during the intervention period compared with fewer than 5 percent of those who received the brochure. (Following the trial, all high-risk women were offered genetic counseling appointments.)
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From page 53... ...
Pasick's team then asked HMLs to distribute and collect the family history screens at Sunday church services. Surprisingly, among those women who only filled out the family history after church, individuals who were at high risk obtained counseling at a higher rate than those who attended the 2-hour workshop.
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From page 54... ...
RECRUITING MINORITY POPULATIONS IN GENOMIC STUDIES THROUGH COMMUNITY-BASED OUTREACH Jacquelyn Taylor told the workshop participants that she studies health equity and genomics and is also a pediatric nurse practitioner. She said that she is interested in the genetic and environmental factors that contribute to disease in minority populations, particularly African Americans.
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From page 55... ...
According to Taylor, another great resource was Alpha Kappa Alpha Sorority Incorporated, the historically black sorority with more than 200,000 members across the United States, and Jack and Jill of America, an organization dedicated to nurturing future African American leaders that has a membership of more than 40,000 African American families across the United States. For her current study, Taylor said, she is recruiting from Head Start programs and YMCAs across Connecticut, and her team is engaged in community outreach efforts, such as participating in health fairs and engaging with local chapters of the National Association for the Advancement of Colored People (NAACP)
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From page 56... ...
It is important to expand genomic screening programs to community venues and community organizations and also to include more underrepresented minorities as principal investigators and key personnel in these studies. Minorities are consistently asked to serve as consultants for a study, Taylor said, but that does not provide the leadership that is needed to effectively recruit minority populations.
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From page 57... ...
The recruited patients had been prescribed 1 of 27 medications with potential pharmocogenetic impact. This study plays an important role in addressing disparities in genetic and genomic health care, Skaar said, because it is known that the routine monitoring of drug response is more difficult for individuals from underserved populations.
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From page 58... ...
She asked the panelists if any of their studies included questions aimed at trying to understand community beliefs about genetic testing. Schwartz said that his study did not ask those questions, and Skaar said he recognized that the lack of genetic testing uptake may be due to the fears and anxieties common in communities, but it is also likely due to financial concerns.
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From page 59... ...
Schwartz proposed looking at genetic tests that have demonstrated clear clinical utility and seeing if it is possible to identify and refer patients in a routine way to ensure that they are obtaining whatever genetic services they need.
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