Evaluation of two-year Jewish genetic disease screening program in Atlanta: insight into community genetic screening app
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ORIGINAL ARTICLE
Evaluation of two-year Jewish genetic disease screening program in Atlanta: insight into community genetic screening approaches Yunru Shao & Shuling Liu & Karen Grinzaid
Received: 11 September 2014 / Accepted: 8 December 2014 # Springer-Verlag Berlin Heidelberg 2015
Abstract Improvements in genetic testing technologies have led to the development of expanded carrier screening panels for the Ashkenazi Jewish population; however, there are major inconsistencies in current screening practices. A 2-year pilot program was launched in Atlanta in 2010 to promote and facilitate screening for 19 Jewish genetic diseases. We analyzed data from this program, including participant demographics and outreach efforts. This retrospective analysis is based on a de-identified dataset of 724 screenees. Data were obtained through medical chart review and questionnaires and included demographic information, screening results, response to outreach efforts, and follow-up behavior and preferences. We applied descriptive analysis, chi-square tests, and logistic regression to analyze the data and compare findings with published literature. The majority of participants indicated that they were not pregnant or did not have a partner who was pregnant were affiliated with Jewish organizations and reported 100 % AJ ancestry. Overall, carrier frequency was 1 in 3.9. Friends, rabbis, and family members were the most common influencers of the decision to receive screening. People who were older, had a history of pregnancy, and had been previously screened were more likely to educate others (all p2300 individuals and was highly successful in creating awareness around the importance of screening for TSD. In the years that followed, there was no formal carrier screening program in the Atlanta area. Jews of reproductive age relied on their personal physicians to recommend and facilitate testing. Some were seen by local genetic counselors. Consequently, there were major inconsistencies in panels offered, in cost, and in post-testing follow-up. In 2010, a two-year pilot program called the Atlanta Jewish Gene Screen (AJGS) was launched with the goal of filling this gap. Its mission was to promote awareness and facilitate preconception carrier screening for the Jewish population in the Atlanta metropolitan area. Based on a population survey of the Atlanta Jewish community in 2006, it was estimated that 3000 babies were born to Jewish families in Atlanta each year (Atlanta 2007). The goal of AJGS was to educate and provide screening options to as many of these individuals as possible, preferably prior to pregnancy, and to update screening for those who had been previously screened with more limited panels. This study is a retrospective analysis of the AJGS program and was designed to identify key demographic parameters of the at risk population in Metropolitan Atlanta. We also evaluated the effectiveness of marketing and outreach efforts in creating awareness and encouraging screening. Results of this
study will help inform effective out
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