“Backdoor to Eugenics”?: the Risks of Prenatal Diagnosis for Poor, Black Women

This article is situated at the intersection of three of the conference’s stated subject areas: Race and Healthcare, Reproductive Rights, and Race and the Family. My recent research has focused on the manner in which pregnant women who learn of fetal genetic abnormalities prenatally receive counseling as they decide whether to terminate or bring their fetuses to term. The decision whether to terminate on genetic grounds is particularly vexing because it often turns on speculative medical information, and it can result in elevated rates of grief, depression, and post-traumatic stress. Though the prenatal genetic counseling offered to expectant women learning of a fetal abnormality exists ostensibly to provide them with objective information rather than to encourage or discourage pregnancy terminations, the reality is that such counseling is often coercive in the direction of aborting genetic anomalous fetuses. Because genetic counseling tends to consider family factors such as wealth and perceived preparedness to raise a child with a persistent medical condition or disability—and because the vast majority of genetic counselors are highly educated white women—the pro-termination norms of prenatal genetic counseling disproportionately impact nonwhite, non-affluent pregnancies. This observation is consistent with prior state and private practices aimed at controlling black reproduction. Because the detection of prenatal genetic abnormalities will soon rise sharply due to advances in technology and increased access to prenatal genetic analysis under the Patent Protection and Affordable Care Act, far more poor, black pregnant women will receive genetic counseling that will make them more likely to abort their fetuses in future years. This article describes the scale and scope of this potentially far- reaching problem and offers suggestions for how to eliminate racial and class bias in prenatal genetic counseling

Genetic Counselors’ Attitudes towards Telegenetics: The Good, The Bad, The In-Between

Given that the global coronavirus pandemic has necessitated a quick and vast transition to telehealth, the purpose of this study is to explore these changes in the field of genetic counseling. To examine the perceived effectiveness of telegenetics from the perspective of genetic counselors, I conducted in-depth, semi-structured interviews with two genetic counselors in which each participant was asked six questions. The interviews were recorded, transcribed, and then analyzed using standard thematic analysis techniques for qualitative data analysis. The analysis revealed two main themes: benefits and drawbacks of telegenetics, with two sub-themes under each. The major benefits are increased patient accessibility and work productivity, while the main drawbacks are limited control over the environment during the encounter and challenges to the provider-patient relationship. Findings were mixed, however, regarding whether telegenetics compromises the provider-patient relationship and so further research is needed in order to establish the if there is a negative correlation between telegenetics and the ability to connect with patients. The results of this study suggest that telehealth is viewed favorably among genetic counselors, although this study also identifies several areas for further improvement that are necessary to address, especially given that the widespread use of telegenetics is likely to continue long after COVID-19 has been contained

The Genetic Counseling Video Project (GCVP): Models of practice.

Genetic counseling is conceptualized as having both “teaching” and “counseling” functions; however, little is known about how these functions are articulated in routine practice. This study addresses the question by documenting, on videotape, the practices of a national sample of prenatal and cancer genetic counselors (GCs) providing routine pre-test counseling to simulated clients (SCs). One hundred and seventy-seven GCs recruited at two annual conferences of the National Society of Genetic Counselors (NSGC) were randomly assigned to counsel one of six female SCs of varying ethnicity, with or without a spouse, in their specialty. One hundred and fifty-two videotapes were coded with the Roter Interaction Analysis System (RIAS) and both GCs and SCs completed evaluative questionnaires. Two teaching and two counseling patterns of practice emerged from cluster analysis. The teaching patterns included: (1) clinical teaching (31%) characterized by low psychosocial, emotional and facilitative talk, high levels of clinical exchange, and high verbal dominance; and (2) psycho-educational teaching (27%) characterized by high levels of both clinical and psychosocial exchange, low levels of emotional and facilitative talk, and higher verbal dominance. The counseling patterns included: (1) supportive counseling (33%) characterized by low psychosocial and clinical exchange, high levels of emotional and facilitative talk, and low verbal dominance; and (2) psychosocial counseling (9%) with high emotional and facilitative talk, low clinical and high psychosocial exchange, and the lowest verbal dominance. SCs ratings of satisfaction with communication, the counselor's affective demeanor, and the counselor's use of non-verbal skills were highest for the counseling model sessions. Both the teaching and counseling models seem to be represented in routine practice and predict variation in client satisfaction, affective demeanor, and nonverbal effectiveness

Paving the Way: A Grounded Theory of Discovery and Decision-Making for Persons Diagnosed with the CDH1 Marker

Purpose: To understand the process of discovery and decision-making for adults with the CDH1 marker for hereditary diffuse gastric cancer (HDGC) and inherited breast cancer. Participants and Setting: Purposeful sampling included 20 participants; 17 adults (11 women and 6 men, ages 23–77) recruited through the No Stomach for Cancer organization; six participants were interviewed two times; with three healthcare providers also interviewed. Nineteen interviews were by telephone; one was in person. Methodological Approach: Grounded theory with constant comparison. Findings: The person diagnosed with the genetic marker CDH1 undergoes the decision-making process of Paving the way as they address this healthcare challenge. Paving the way explains the entry points for learning the risk, discerning testing for confirmation, choosing iterative individual cycles of surveillance, surgery, and ongoing adjustments postoperatively while normalizing to live longer. Implications for Nursing: Understanding the process of Paving the way explains and describes the nine key factors for decision-making and predicts the timing for nursing interventions for both post-genetic testing and pre- and postoperative assessment and planning. Knowledge Translation: Advocacy for the self and family is key to Paving the Way. Nursing has an opportunity to develop and expand the roles for navigator and counselor in the area of genetic testing. Patients undergoing PTG have chronic healthcare needs. Family implications for genetic testing require assessment beyond the individual

Adapting to the challenges of the global pandemic on genetic counselor education: Evaluating students’ satisfaction with virtual clinical experiences

Travel restrictions, physical distancing, and limits to clinical placements due to the global pandemic raised enormous challenges for genetic counseling education in 2020. In response, we created authentic virtual clinical experiences in our Master of Genetic Counseling program, mimicking clinical practice: virtual simulation with standardized clients, and virtual clinical placements, including intake calls, triage, consultations, teamwork and time management, and genetic counseling with standardized clients. The virtual clinical experiences involved online pre-brief, simulation, and debrief. We aimed to evaluate students' satisfaction with this learning method. Between April and November 2020, we distributed an anonymous online survey to all participating students using a modified version of a validated satisfaction with simulation scale. We analyzed the combined responses from first- and second-year virtual clinical experiences using descriptive statistics and content analysis. The total number of possible responses was 120. The mean response rate was 68.36% (n = 82.03), with a mean of 16.41 participants responding to each survey from each year group. Of the first-year participants, 53% (n = 10) had not observed a genetic counseling consultation before attending the virtual clinical placement. Overall, 92.5% of responses indicated that students were satisfied with the virtual clinical experiences (SD = 0.05). 100% (n = 82) of responses indicated that working with standardized clients was beneficial to learning, encouraged reflection on clinical ability and was a valuable learning experience overall. However, 37.78% (n = 17) of those who participated in the virtual simulation found that the use of Zoom detracted from their clinical learning. The virtual clinical experiences increased first-year students' confidence about clinical placement and prepared second-year students for telehealth. In conclusion, the adaptation to virtual clinical experiences enhanced learning for most students, prepared them for practice, met the requirements of the accreditation body and enabled all of our final year students to graduate on time

2013 Review and Update of the Genetic Counseling Practice Based Competencies by a Task Force of the Accreditation Council for Genetic Counseling

The first practice based competencies (PBCs) for the field of genetic counseling were adopted by the American Board of Genetic Counseling (ABGC), 1996. Since that time, there has been significant growth in established and new work settings (clinical and non‐clinical) and changes in service delivery models and the roles of genetic counselors. These changes prompted the ABGC to appoint a PBC Task Force in 2011 to review the PBCs with respect to their current relevance and to revise and update them as necessary. There are four domains in the revised PBCs: (I) Genetics Expertise and Analysis (II) Interpersonal, Psychosocial and Counseling Skills (III) Education and (IV) Professional Development and Practice. There are 22 competencies, each clarified with learning objectives or samples of activities and skills; a glossary is included. New competencies were added that address genomics, genetic testing and genetic counselors’ roles in risk assessment, education, supervision, conducting research and presenting research options to patients. With PBCs serving as the pre‐defined abilities or outcomes of training, graduating genetic counselors will be well prepared to enter the field with a minimum level of skills and abilities. A description of the Task Force’s work, key changes and the 2013 PBCs are presented herein.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/147172/1/jgc40868.pd

Barriers to family history collection among Spanish-speaking primary care patients: a BRIDGE qualitative study

Objects: Family history is an important tool for assessing disease risk, and tailoring recommendations for screening and genetic services referral. This study explored barriers to family history collection with Spanish-speaking patients. Methods: This qualitative study was conducted in two US healthcare systems. We conducted semi-structured interviews with medical assistants, physicians, and interpreters with experience collecting family history for Spanish-speaking patients. Results: The most common patient-level barrier was the perception that some Spanish-speaking patients had limited knowledge of family history. Interpersonal communication barriers related to dialectical differences and decisions about using formal interpreters vs. Spanish-speaking staff. Organizational barriers included time pressures related to using interpreters, and ad hoc workflow adaptations for Spanish-speaking patients that might leave gaps in family history collection. Conclusions: This study identified multi-level barriers to family history collection with Spanish-speaking patients in primary care. Findings suggest that a key priority to enhance communication would be to standardize processes for working with interpreters. Innovation: To improve communication with and care provided to Spanish-speaking patients, there is a need to increase healthcare provider awareness about implicit bias, to address ad hoc workflow adjustments within practice settings, to evaluate the need for professional interpreter services, and to improve digital tools to facilitate family history collection