Implicit and explicit racial prejudice and stereotyping toward Black (vs. White) Americans: The prevalence and variation among genetic counselors in North America

12.15.2022

Research has shown that patient experiences and outcomes of genetic counseling are not equitable across racial categories, disadvantaging Black patients relative to White patients. One major factor contributing to such racial disparities might be genetic counselor racial bias. The present study examined the prevalence of and variation in racial bias toward Black (vs. White) Americans among genetic counselors in North America. This study extends the current literature of racial disparities in experiences and outcomes of genetic counseling by distinguishing prejudice (negative feelings or attitudes) and stereotyping (beliefs) at the implicit and explicit levels as well as by including both certified genetic counselors and genetic counseling trainees. Two-hundred and fifteen genetic counselors (107 genetic counselors Board-certified by the American Board of Genetic Counseling, 108 genetic counseling trainees from Accreditation Council for Genetic Counseling accredited programs) completed four measures in a random order: the Race Implicit Association Test (IAT, for implicit prejudice), feeling thermometer (for explicit prejudice), the Medical Cooperativeness IAT (for implicit stereotyping), and a self-report measure of explicit stereotypes (for explicit stereotyping). On average, genetic counselors (both certified genetic counselors and genetic counseling trainees) were slightly to moderately in favor of White Americans over Black Americans at the implicit level. They were also slightly more likely to associate “medically cooperative” stereotypes with White Americans more than Black Americans implicitly. In contrast, genetic counselors, on average, did not display either explicit prejudice or explicit negative stereotyping, which may reflect social desirability concerns among genetic counselors. However, genetic counselors as a group strongly endorsed stereotypes related to mistrust (mistrustful of the healthcare system, skeptical of genetic testing, mistrustful of genetic counselors) to be more true for Black (vs. White) Americans. Finally, our study revealed relatively large variability in each type of bias across genetic counselors. Future research should examine how such variability in each type of bias is associated with patient experiences and outcomes of genetic counseling.

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Latinx attitudes, barriers, and experiences with genetic counseling and testing: A systematic review

12.15.2022

As genetics is increasingly used across clinical settings, there is a need to understand the impact and experiences of diverse patients. This review systematically examined research literature on Latinx experiences with genetic counseling and genetic testing (GC/GT) in the United States, synthesizing key themes and knowledge gaps pertaining to both patient experience and hypothetical scenarios. Findings were based on a systematic search, inclusion, and thematic analysis of 81 empirical peer-reviewed articles published from January 1990 to July 2019 pertaining to Latinx populations and GC/GT. Studies most commonly addressed Latinas' perspectives on GC/GT in prenatal settings or for hereditary breast and ovarian cancer (HBOC). Costs, referrals, and communication were significant barriers to accessing genetic services for many Latinx patients, particularly those with low English proficiency (LEP). Studies highlighted difficulties accessing and communicating in healthcare settings, and how medical context and prior experience with healthcare workers and institutions influenced GC/GT decision-making. Providers' implicit biases about Latinx patients negatively impacted their care and impeded communication. Despite low awareness of cancer GT, Latinx patients often reported interest in learning more about GC/GT or unmet needs for GT discussion and provider involvement. This systematic review identified areas where providers can take action to improve Latinx experiences with GC/GT. Clinicians should elicit and respond to patient preferences about shared decision-making. For patients with low numeracy or LEP, providers should consider tailored educational and communication techniques. Most studies focused on HBOC and prenatal testing, and Latinx patients are heterogeneous, leaving many research questions about Latinx experience with GT/GC in other clinical areas.

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Genetic testing and counseling for the unexplained epilepsies: An evidence-based practice guideline of the National Society of Genetic Counselors

12.15.2022

Epilepsy, defined by the occurrence of two or more unprovoked seizures or one unprovoked seizure with a propensity for others, affects 0.64% of the population and can lead to significant morbidity and mortality. A majority of unexplained epilepsy (seizures not attributed to an acquired etiology, such as trauma or infection) is estimated to have an underlying genetic etiology. Despite rapid progress in understanding of the genetic underpinnings of the epilepsies, there are no recent evidence-based guidelines for genetic testing and counseling for this population. This practice guideline provides evidence-based recommendations for approaching genetic testing in the epilepsies using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Evidence to Decision framework. We used evidence from a recent systematic evidence review and meta-analysis of diagnostic yield of genetic tests in patients with epilepsy. We also compiled data from other sources, including recently submitted conference abstracts and peer-reviewed journal articles. We identified and prioritized outcomes of genetic testing as critical, important or not important and based our recommendations on outcomes deemed critical and important. We considered the desirable and undesirable effects, value and acceptability to relevant stakeholders, impact on health equity, cost-effectiveness, certainty of evidence, and feasibility of the interventions in individuals with epilepsy. Taken together, we generated two clinical recommendations: (1) Genetic testing is strongly recommended for all individuals with unexplained epilepsy, without limitation of age, with exome/genome sequencing and/or a multi-gene panel (>25 genes) as first-tier testing followed by chromosomal microarray, with exome/genome sequencing conditionally recommended over multi-gene panel. (2) It is strongly recommended that genetic tests be selected, ordered, and interpreted by a qualified healthcare provider in the setting of appropriate pre-test and post-test genetic counseling. Incorporation of genetic counselors into neurology practices and/or referral to genetics specialists are both useful models for supporting providers without genetics expertise to implement these recommendations.

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Introduction of the genetic counseling profession by teachers in BIPOC-majority high schools

12.15.2022

The field of genetic counseling is racially and ethnically (RE) homogenous, with 90% of genetic counselors identifying as white. As awareness of genetic counseling increases interest in the career, one proposed method to increase the profession's RE diversity is to introduce genetic counseling as a career option to Black, Indigenous, and people of color (BIPOC) students during high school. This study explores the knowledge, presentation, and perceptions of the genetic counseling profession by high school teachers at BIPOC-majority high schools in the United States (US). Science teachers working at public high schools in Massachusetts and New York where greater than 75% of the student body identifies as BIPOC were invited to participate in a survey and focus groups for this study. A total of 456 teachers participated in the survey and a total of seven teachers participated in two focus groups. The survey data revealed that most (91.8%) participating teachers presented genetic counseling, though BIPOC-identifying teachers were more likely to report never presenting genetic counseling than white-identifying teachers. In addition, teachers' knowledge of the genetic counseling career and frequency of presenting it were strongly associated, suggesting that increasing knowledge of genetic counseling among teachers, particularly those who are BIPOC-identifying, could lead to increased presentation to BIPOC students. Major themes that emerged through the focus groups included (1) teachers perceiving genetic counseling as novel and complex in comparison to other healthcare professions, (2) teachers sharing that multiple methods can and should be used when introducing genetic counseling to students, and (3) the notion that teachers could have an important role in introducing genetic counseling to their students. Considering findings from the survey and focus groups, recommendations from this study include increasing awareness of genetic counseling among BIPOC-identifying science teachers at BIPOC-majority high schools, gradually introducing genetic counseling topics to students beginning at a young age, and utilizing student-led teaching activities.

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White House Office of Science and Technology Policy Event – Clinical Genomics: Ending Diagnostic Odysseys & Enhancing Equity in Patient Care

12.5.2022

This online event took place on September 22, 2022, and was co-hosted by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). This 2-hour event explored uses of rapid genomic sequencing, yield of testing and showcased potential strategies and state models for facilitating insurance coverage and enabling equitable patient access. One of the sessions was moderated by NSGC Past President, Wendy Uhlmann, MS, LCGC and genetic counselors were recognized by multiple presenters.

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Study Gauges Success of Telephone vs. In-Person Genetic Counseling in Underserved Populations

11.19.2022

NASHVILLE, Tenn. – Nov. 19, 2022 – People from underserved populations are as likely to complete a visit with a genetic counselor in person as by telephone, suggests interim data from a study whose lead investigator was awarded a Jane Engelberg Memorial Fellowship (JEMF). The interim report is being presented at the National Society of Genetic Counselors (NSGC) 41st Annual Conference.

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NSGC ANNUAL CONFERENCE NEWS BRIEFS

11.16.2022

Research Demonstrates Genetic Counselors’ Role in Patient Care

NASHVILLE, Tenn. – Nov. 16, 2022 – Genetic testing may help determine the most appropriate medication for children with attention deficit disorder (ADD), electronic medical records can help decrease disparities in access to genetic testing, most people offered genetic testing at work are not familiar with discrimination protections and genetic counselors play a vital role in a national effort to build a diverse health database. These are among the research findings being presented at the National Society of Genetic Counselors (NSGC) 41st Annual Conference.

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About Half of Autistic Adults Think Genetic Testing Shouldn’t be Performed

11.16.2022

NASHVILLE, Tenn. – Nov. 16, 2022 – Autistic adults have serious concerns about genetic testing for the condition, with nearly half saying it shouldn’t be done at all, according to results of a survey being presented at the National Society of Genetic Counselors (NSGC) 41st Annual Conference.

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Preimplantation Genetic Testing of Embryos Skyrocketing, Study Finds Suggests Growth Related to Increase in Genetic Testing Overall

11.16.2022

NASHVILLE, Tenn. – Nov. 16, 2022 – The use of preimplantation genetic testing as a part of in vitro fertilization (IVF) has skyrocketed, and is likely linked to the increased use of carrier screening and other forms of genetic testing, suggests a study being presented at the National Society of Genetic Counselors (NSGC) 41st Annual Conference.

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Regulation of Genetic Testing

11.15.2022

The National Society of Genetic Counselors supports regulation of genetic testing for health-related conditions and hereditary diseases for clinical use.

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