Deborah Cragun

Genetic Counselors’ Religiosity & Spirituality: Are Genetic Counselors Different from the General Population?

Although there is evidence that the religious beliefs of genetic counselors (GCs) can induce internal conflict in at least some genetic counseling scenarios, empirical research on the religiosity of GCs is limited. This study compares genetic counselors to a representative sample of the adult U.S. population on multiple religiosity measures. After controlling for several sociodemographic factors the percentage of GCs who report having a religious affiliation is similar to the general U.S., but GCs are less likely to affiliate with conservative Christian religions and are more likely to be Jewish. GCs are significantly less likely than the general U.S. population to: believe in god, attend religious services, pray, and believe in an afterlife even after controlling for relevant sociodemographic factors. Despite the lower levels of religiosity, a majority of GCs do report themselves to be moderately to highly spiritual. We explore potential reasons for religiosity differences as well as possible implications in the context of the GC scope of practice.

Views on Abortion: A Comparison of Female Genetic Counselors and Women from the General Population

While literature characterizing individual genetic counselors’ abortion attitudes is sparse, the National Society of Genetic Counselors takes a clear stance for reproductive autonomy. To determine genetic counselors’ views, this study compared (1) genetic counselors’ abortion attitudes to those of women from the general population and (2) genetic counselors’ professional abortion attitudes to their personal abortion attitudes. Genetic counselors were invited to complete an online survey. Response rate was 44.3% (709/1,601). Compared to women from the general population, female genetic counselors were significantly more likely to agree abortion should be an option in all cases (p < .001). Controlling for other possible confounders, regression analyses revealed that being a genetic counselor, religious service attendance and age were significantly predictive of abortion attitudes. Although the vast majority of genetic counselors agree that abortion should be available, they are significantly less likely to personally consider abortion under all circumstances presented (p < .001), and the percentage of genetic counselors who would consider terminating in the case of a severe birth defect is similar to studies of other women.

Recruitment of a Population-Based Sample of Young Black Women with Breast Cancer through a State Cancer Registry.

Given that Black women remain underrepresented in clinical research studies, we sought to recruit a population‐based sample of young Black women with breast cancer through a state cancer registry. Demographic and clinical information on all Black women diagnosed with invasive breast cancer at or below age 50 between 2009 and 2012 in Florida was obtained through the state cancer registry. Survivors were invited to participate in the study through state‐mandated recruitment methods. Participant demographic and clinical characteristics were compared using Chi‐squared tests for categorical variables and the two sample t‐test for continuous variables to identify differences between: (i) consented participants versus all other eligible; and (ii) living versus deceased. Of the 1,647 young Black women with breast cancer, mean age at diagnosis was 42.5, with the majority having localized or regional disease, unmarried, privately insured, and employed. There were no significant differences in demographic and clinical variables between the 456 consented study participants versus the remaining 1,191 presumed eligible individuals. Compared to potential participants, women determined to be deceased prior to recruitment (n = 182) were significantly more likely to have distant disease and a triple‐negative phenotype. They were also significantly more likely to be unemployed, and uninsured or have public insurance (i.e., Medicaid or Medicare). Our results demonstrate that recruitment of a population‐based sample of breast cancer survivors through a state cancer registry is a feasible strategy in this underserved and underrepresented population. However, survival bias, which was observed due to the lag time between diagnosis and recruitment, is important to adjust for when generalizing findings to all young Black breast cancer patients.

Applying Public Health Screening Criteria: How Does Universal Newborn Screening Compare to Universal Tumor Screening for Lynch Syndrome in Adults with Colorectal Cancer?

Institutions have increasingly begun to adopt universal tumor screening (UTS) programs whereby tumors from all newly diagnosed patients with colorectal cancer (CRC) are screened to identify who should be offered germline testing for Lynch syndrome (the most common cause of hereditary CRC). Given limited information about the impact of universal screening programs to detect hereditary disease in adults, we apply criteria used to evaluate public health screening programs and compare and contrast UTS with universal newborn screening (NBS) for the purpose of examining ethical implications and anticipating potential outcomes of UTS. Both UTS and a core set of NBS conditions clearly meet most of the Wilson and Jungner screening criteria. However, many state NBS panels include additional conditions that do not meet several of these criteria, and there is currently insufficient data to confirm that UTS meets some of these criteria. Comparing UTS and NBS with regard to newer screening criteria raises additional issues that require attention for both UTS and NBS. Comparisons also highlight the importance of evaluating the implementation of genomic tests to ensure or improve their effectiveness at reducing morbidity and mortality while minimizing potential harms.

Hereditary Cancer: Example of a Public Health Approach to Ensure Population Health Benefits of Genetic Medicine

This article introduces the identification, prevention, and treatment of hereditary cancer as an important public health concern. Hereditary cancer research and educational outreach activities are used to illustrate how public health functions can help to achieve health benefits of genetic and genomic medicine. First, we evaluate genetic service delivery through triangulating patient and provider survey results which reveal variability among providers in hereditary cancer knowledge and genetic service provision. Second, we describe efforts we have made to assure competency among healthcare providers and to inform, educate and empower patients with regard to the rapidly evolving field of genomics and hereditary cancer. Lastly, key policy-issues raised by our experiences are discussed in the context of how they may help us to more effectively translate future genomic technologies into practice in order to attain population health benefits from genetic and genomic medicine.

“Be Prepared if I Bring It Up: ” Patients’ Perceptions of the Utility of Religious and Spiritual Discussion During Genetic Counseling

As debates continue about the relevance of religion to health care, research is needed to guide decisions about whether genetic counselors (GCs) should routinely address religious and/or spiritual (R/S) issues with their patients. We conducted an online survey to gauge patient perspectives on this issue. Among the 70 respondents, frequencies of closed-ended responses and thematic analyses of open-ended responses revealed multiple patient concerns related to R/S discussions with GCs. Although 60 respondents reported being R/S, only a small minority would want to discuss R/S issues if it meant less time discussing medical information. Most respondents also expressed opinions that: 1) genetic counseling should be about science; 2) GCs are not qualified to discuss R/S issues; 3) other outlets are available to meet the needs of patients who want R/S counseling; and/or 4) R/S discussions are more likely to be acceptable if patients broach the topic or in specific circumstances (e.g., when patients are facing end-of life issues). Overall, responses suggest routine or comprehensive R/S assessments or discussions are not necessary and that GCs would be best equipped to help all their patients if they were prepared to listen, be supportive, and make referrals when R/S issues arise in clinic.