Conscience clauses in genetic counseling: Awareness and attitudes.

Conscience clauses are laws that allow healthcare providers to refuse to participate in legal medical services based on moral or ethical objections. Genetic counselors encounter a variety of ethical and moral issues, including counseling about abortions. Currently, three states (Oklahoma, Nebraska, and Virginia) have genetic counseling conscience clause laws that allow genetic counselors to refuse to counsel about abortions. Conscience clause laws applying to physicians and pharmacists have been studied; however, they have not been studied in genetic counseling to date. We conducted an exploratory study assessing conscience clause awareness, attitudes, perceived obligations if utilizing a conscience clause, and alignment with the National Society of Genetic Counseling (NSGC) Code of Ethics. Genetic counselors (n = 274) currently practicing in the United States completed an online survey recruited through the NSGC listserv. The majority of participants were not aware that conscience clauses exist for genetic counseling (90%). There was uncertainty about whether genetic counselors had the right to utilize a conscience clause in practice (24% said yes, 31% said no, and 45% were unsure/needed more information). The majority reported an obligation to refer a patient if implementing a conscience clause (90%), although there were discrepancies among what constitutes an appropriate referral. When asked about the interaction between conscience clauses and the NSGC Code of Ethics, 45% believe they are separate and one does not supersede the other, 31% felt the Code of Ethics supersedes, 8% felt conscience clauses supersede, and 16% were unsure. Our study shows overall uncertainty with how conscience clause laws may be applied in clinical practice. Further clarity and education, especially in states where these laws exist, is critical to navigate the interaction between conscience clause laws and genetic counseling practice.

Geographical analysis of the distribution of certified genetic counselors in the United States.

The number of certified genetic counselors (CGCs) in the genetic counseling workforce has increased over the past few decades as the number of training programs increases and CGCs expand into new patient-facing and non-patient-facing roles. Few studies have explored the distribution of CGCs across the United States. We sought to identify the U.S. geographical regions with the highest number of CGCs and those regions where the physical presence of CGCs is sparser. Deidentified city, state, and ZIP code information for each CGC in the United States were obtained from the American Board of Genetic Counseling (ABGC) database. A countrywide analysis of the distribution of CGCs was completed using geographic information system (GIS) mapping software. The data were organized into U.S. metropolitan or micropolitan statistical areas, if applicable, and analyzed by CGC per capita. We included a total of 4,554 data points (92.2%) in the analysis. Results showed there is one CGC for every 71,842 people nationwide. Of 3,141 total counties (or county equivalents) in the United States, 535 counties had at least one CGC (17.0%). The majority (98.7%) of CGCs live or work within metropolitan statistical areas (MSAs), which are defined by this study as geographical areas with greater than 50,000 people. Of the MSAs with a CGC, approximately half have more than one CGC per 100,000 people. These results are consistent with the overall distribution of the U.S. population. We believe that the MSAs with the most CGCs per capita are due to associations with specific institutions, that is, genetic counseling training programs, health system headquarters, or genetic laboratories. Although the present study cannot draw definite conclusions regarding direct patient care services provided by CGCs, it does provide a snapshot of current CGC distribution within the country. Knowing the distribution of CGCs provides a tool to conduct further workforce analyses to determine the number of CGCs needed to serve the U.S. population.

Inherited retinal degeneration current genetics practices - a needs assessment.

BACKGROUND: Clinical assessment of patients with IRD often includes thorough documentation of medical and ocular history in addition to genetics related practices like assessing the family history and genetic testing. Previous studies have demonstrated the genetic counseling needs of IRD patients are not being fully met, but there is a lack of literature showing the current genetics practices of ophthalmologists and optometrists in the U.S. The goal of this study is to assess the current genetics related practices being provided to patients with IRD. METHODS: Data from 51 survey participants were included in the analysis. The survey assessed their current practices of risk counseling to patients with IRD, their confidence level of ocular genetics, and resources they may utilize in the future. Descriptive statistics were used to summarize quantitative data while data from open ended responses were coded using thematic analysis generated through grounded theory. RESULTS: Responses suggest some discussion of genetics is occurring with IRD patients. However, there are limitations to these discussions given time constraints and lack of understanding of the genetics of IRDs and available testing. The study also revealed that there are minimal referrals to genetic counseling being made at this time, though there is interest in working with genetic counselors. Additionally, there is a need for continued education regarding the genetics related to IRDs. CONCLUSION: Future larger-scale studies are warranted to provide additional insight into these genetics related practices and where genetic counselors are needed in this field.

Using Social Network Analysis to Visualize Networks in American Indian Health Research.

The Collaborative Research Center for American Indian Health (CRCAIH) is a transdisciplinary, collaborative center focused on building American Indian tribal research infrastructure. Funded by the National Institute of Minority Health and Health Disparities in 2012, it was created as a platform to join tribal communities and researchers in South Dakota, North Dakota, and Minnesota to develop research infrastructure and stimulate research in American Indian health. The CRCAIH infrastructure has created a large network of transdisciplinary research partnerships. To understand the initial development of the CRCAIH network and understand the broader impact it has had on American Indian and Alaska Native health research, CRCAIH undertook a network analysis based on publications by collaborators working with and within CRCAIH. The network analysis showed how far the CRCAIH network went in a short period of time to create a platform for networking to build collaborations and further stimulate research with American Indian communities.

Platelet motion near a vessel wall or thrombus surface in two-dimensional whole blood simulations.

Computational simulations using a two-dimensional lattice-Boltzmann immersed boundary method were conducted to investigate the motion of platelets near a vessel wall and close to an intravascular thrombus. Physiological volume fractions of deformable red blood cells and rigid platelet-size elliptic particles were studied under arteriolar flow conditions. Tumbling of platelets in the red-blood-cell depleted zone near the vessel walls was strongly influenced by nearby red blood cells. The thickness of the red-blood-cell depleted zone was greatly reduced near a thrombus, and platelets in this zone were pushed close to the surface of the thrombus to distances that would facilitate their cohesion to it. The distance, nature, and duration of close platelet-thrombus encounters were influenced by the porosity of the thrombus. The strong influence on platelet-thrombus encounters of red-blood-cell motion and thrombus porosity must be taken into account to understand the dynamics of platelet attachment to a growing thrombus.