Exploring prenatal genetic counselors' perceptions of abortion laws in restrictive states

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.

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Conscience clauses in genetic counseling: Awareness and attitudes

Bonine

Bell

Fishler

et al. 2021

“…In addition, a recent qualitative study by Koenig et al, (2019) explored how genetic counselors (n = 16) learn about abortion laws in their state and how state abortion laws influence genetic counselors' interactions with their patients when practicing in states with highly restrictive abortion laws. This study found that restrictiveness of states abortion laws impacted practice while also placing a financial and emotional burden on their patients.…”

Section: What This Paper Adds To the Topicmentioning

confidence: 99%

“…This study found that restrictiveness of states abortion laws impacted practice while also placing a financial and emotional burden on their patients. To better understand the relationship between restrictiveness of abortion laws and prenatal genetic counseling, Koenig et al, (2019) adopted the Guttmacher Institute's categorization of states based on the number of laws that restrict access to abortion. To our knowledge, no other studies have been done regarding the effect of abortion legislation on genetic counseling practice and work environment.…”

Section: What This Paper Adds To the Topicmentioning

confidence: 99%

“…The purpose of this study is to expand on and determine the generalizability of the conclusions drawn by Koenig et al, (2019) by eliciting prenatal genetic counselors' perceptions of regulations to abortion access in different states. We focused on furthering our understanding of prenatal genetic counselors' perceptions of how state abortion laws and institutional restrictions affect interactions with their patients when discussing and coordinating abortion.…”

Section: What This Paper Adds To the Topicmentioning

confidence: 99%

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Prenatal genetic counselors' perceptions of the impact of abortion legislation on counseling and access in the United States

Jayaraman

Koenig

Fiddler

et al. 2021

Self Cite

Genetic counselors have an important role in offering and appropriate coordinating abortion services for patients identified with a fetal abnormality. Few studies have been conducted to determine the effects of legislation on genetic counselors and patients. This study aimed to further our understanding of genetic counselors' perception of the impact of abortion regulations on their practice, the perceived financial and emotional impact on their patients and their ability to access abortion.A 22-question survey was developed based on themes identified by a qualitative study (Koenig et al., 2019, Journal of Genetic Counseling, 28, 790-801), and distributed to members of the National Society of Genetic Counselors; data from 113 respondents are analyzed. For analysis, participants were categorized into three groups based on the restrictiveness of their state's abortion legislation (supportive, middle ground, hostile) using the Guttmacher Institute's designation based on the amount of restrictive abortion legislation in their state. Participants reported that legislative gestational age restrictions significantly impact their counseling and coordinating of abortion services. Participants reported emotional and financial burdens that impact their patients seeking abortion; however, those in hostile states were significantly more likely to report a perceived financial or emotional impact on their patients.Participants in hostile states were more likely than those in supportive states to report that many of the addressed legislative and institutional regulations impact patients' ability to access abortion. Abortion regulations limiting the decision-making time frame for patients with a fetal abnormality have a significant impact on the practice of prenatal genetic counseling. Further restrictions may change how genetic counselors choose to counsel their patients about the option of abortion, but also may limit the availability of choices particularly for patients in rural areas, in hostile states, and those without the financial resources to travel or pursue termination at later gestational ages.

Pregnant women's experiences of non‐invasive prenatal testing (NIPT) in Japan: A qualitative study

Yamamoto

Chang

Fukushima

2021

In Japan, prenatal testing does not include a publicly insured routine health check‐up for pregnant women. Hence, taking advantage of such prenatal testing procedures is still not an option for a majority of Japanese women. However, social support systems for children and adults with disabilities have been developed with the assumption that people with disabilities will continue receiving support from their family members, especially their mothers. In this study, we described pregnant women's experiences regarding noninvasive prenatal testing (NIPT) within the context of their physical experiences during the NIPT process, Japanese society, and their medical circumstances. Women with no family history of genetic diseases or fetal disabilities and who had also received negative results after the NIPT explanation were recruited. Altogether, 15 women participated in the biographical narrative interview. The data were subjected to reflexive thematic analysis and signified advanced age for pregnancy as a trigger for both the women's consideration regarding receiving NIPT and interventions from their families and social group members. Participants considered themselves as the main caretaker for the older adults and individuals with disabilities and thus were afraid of the multiple responsibilities inherent in this reality. They were also concerned about the impact on any other siblings if the baby had disabilities. In addition, participants encounter physical and mental changes during the timeframe of the NIPT processes. Hence, as their fetuses mature, the psychological bonds the women develop with them are constantly evolving, and participants with histories of miscarriages or possible miscarriages expressed concerned not only about the results of NIPT but also about the specific possibility of losing their child in any way. In conclusion, the continuous support of these women throughout the NIPT process and social efforts for the improvement of the welfare system for people with disabilities are required to utilize NIPT effectively.