Perception of the Effect on Practice of Laws

Genetic Counselors’ Perception of the Effect on Practice of Laws
Restricting Abortion
Caitlin Cooney1 & Laura Hercher2 & Komal Bajaj3
Received: 17 June 2016 /Accepted: 14 February 2017 /Published online: 27 March 2017
# National Society of Genetic Counselors, Inc. 2017
Abstract In 2013, twenty-two states enacted seventy provisions restricting access to abortion. The legislation restricted
access to abortions by instituting more regulations on providers
and facilities, by prohibiting abortion prior to viability, by
restricting funding available to patients and by requiring patients to wait a mandatory time period before having a procedure. Genetic counselors are trained to provide unbiased, comprehensive information in a non-directive style in order to allow patients to exercise their reproductive freedom. We developed a survey of 37 questions for genetic counselors to gauge
the potential impact these provisions will have on their ability
to be a patient advocate. A total of 286 individuals completed
the survey; however, not all respondents answered all questions. Qualitative questions complemented quantitative survey
entries, allowing respondents to input thoughts and examples.
Results indicate genetic counselors in all regions share similar
professional opinions about the provisions. More genetic counselors in the South and Midwest noticed changes impacting
patients since the provisions have been enacted. These regional
differences correlate with the location of states that have seem
the greatest increase in antiabortion provisions.
Keywords Abortion legislation . Counseling style . Patient
advocacy
Introduction
In 1973, the landmark Supreme Court Case Roe v. Wade legalized abortion throughout the United States, a decision that revolutionized reproductive health care for women (Reagan 1998;
Roe v. Wade 1973). It allowed for standardized practice guidelines, expanded access to services, and clinics specialized in
reproductive health (Cates et al. 1995; Pazol et al. 2013;
Joyce et al. 2009; Cates et al. 2003). Furthermore, safe abortions were incorporated into mainstream medical practice
(Harper et al. 2005; Schoen 2013; Wilson 2013). However,
following the Supreme Court decision in Planned Parenthood
v Casey in 1992, states began to enact laws that targeted abortion providers and abortion centers (Borgmann 2013; Linton
1993). This process of restricting access via legislative activism
has greatly accelerated during the past five years.
In total, 205 state-level restrictions were enacted between
2011 and 2013, with an additional 83 signed between 2013
and 2015, as compared to only 189 laws enacted during the
entire previous decade. There is considerable evidence that
legislation placing restrictions on facilities, physicians, and
family care providers is impacting access to abortion. There
was a 12% decrease in the number surgical abortion clinics in
the U.S. from 2012 to 2013, and 43 surgical clinics and 11
medical abortion clinics closed in the same year, leaving 517
surgical and 213 medical abortion clinics nationwide (AGI
2014c, d; Sullenger 2013). However, there are limited data
assessing the direct impact on patients and providers. A single
study found 86% of their patient sample stated that the 72-h
waiting period prior to a termination did not impact their decision (Roberts et al. 2016). Closing clinics and increasing
Electronic supplementary material The online version of this article
(doi:10.1007/s10897-017-0083-x) contains supplementary material,
which is available to authorized users.
* Caitlin Cooney
caitcooney@gmail.com
1 Department of Maternal Fetal Care Center, NYU Langone Medical
Center, 150 E 32nd St. Suite 101, New York, NY 10016, USA
2 The Joan H. Marks Graduate Program in Human Genetics, Sarah
Lawrence College, Bronxville, NY, USA
3 New York City Health + Hospitals, New York, NY, USA
J Genet Counsel (2017) 26:1059–1069
DOI 10.1007/s10897-017-0083-x
restrictions raise questions as to the effect these changes are
having on the options prenatal counselors have available to
offer their patients.
According to the Guttmacher Institute, the number of states
considered Bhostile to abortion^ increased from 13 to 27 over
the past decade. As of January 2016, 12 states mandated preabortion counseling requiring a discussion of fetal pain, 5 states
required patients to receive information on the possible link
between an abortion and breast cancer, and 28 states mandated
waiting periods (AGI 2014a). Thirteen states have passed bans
on abortions after 20 weeks’ gestation, despite the fact that this
is prior to the point of viability (24 weeks) as outlined by Roe v.
Wade (Johnson 2013; Cohen and Sayeed 2011).
Additional regulations, commonly referred to as targeted
regulations of abortion providers (TRAP laws), hold facilities
where abortions are performed to standards that far exceed those
required for other stand-alone surgery centers (Gold and Nash
2013; Nash 2016). These provisions have resulted in the closure
of multiple clinics in states where they have been enacted, including 23 in Texas alone since 2012 (Eggertson 2013;
Fernandez and Eckholm 2014). Twenty four states require facilities that have abortion services to meet standards at or above
those intended for ambulatory surgical centers and 13 states
place requirements without proven medical value on the clinicians who perform abortions (AGI 2014e; Nash 2015). Three
states require providers to have admitting privileges (TN, TX,
UT), and 4 states have similar legislation pending (ND, KS, Al,
MS) (AGI 2014b). A challenge to the Texas TRAP laws
reached the United States Supreme Court in 2016, and the 5–
3 decision in Whole Woman’s Health v. Hellerstedt found that
both the admitting privileges requirement and the surgical center standard created an undue burden on women seeking to
exercise their protected right to reproductive choice, and were
therefore unconstitutional (Domonoske 2016) (Whole
Woman’s Health v. Hellerstedt 2016). This decision is expected
to restrict and even reverse the spread of TRAP laws as an
obstacle to abortion access, although the full impact is hard to
predict and will play out on a state-by-state basis.
In 2013 and in 2014, both the American Congress of
Obstetricians and Gynecologists (ACOG) and the American
College of Medical Genetics and Genomics (ACMG) issued
statements detailing concerns about the possible impact this legislation could have on patient care. ACOG stated, B[…].
Legislative restrictions fundamentally interfere with the patientprovider relationship and decrease access to abortion for all
women, and particularly for low-income women and those living
long distances from health care providers (Committee on Health
Care for Underserved Women 2014).^ ACMG stated, B[…]
Access to safe and legal termination of pregnancy for genetic
disorders or congenital anomalies that may be diagnosed prenatally is a critically important option for some pregnant couples,
and the ACMG strongly opposes legislation that places limits on
this access (ACMG Board of Directors 2013).^ However, no
professional organizations have acknowledged and no study
has investigated the possible impact of these regulations on genetic counseling. In 2014, NSGC reaffirmed that the organization
Bsupports the right of all individuals and couples to make reproductive choices. These include using information from genetic
counseling and/or testing to decide whether to pursue a pregnancy, to utilize assisted reproductive technologies, to prepare for
birth and further needs of their offspring, to make an
adoption plan, or to end a pregnancy.^ ACOG, ACMG
and NSGC have all demonstrated a strong commitment
to reproductive rights, but have not been able to provide
any guidance based on a specific understanding of the
effect of policy changes on patient care.
Purposes of the Study
Current and proposed abortion legislation could potentially impact genetic counselors in three ways: by prohibiting abortion
prior to viability, by placing restrictions on clinics that affect
their ability to offer services, and by mandating counseling and
waiting periods that interfere with timely access to abortion
procedures. Our research focused on four proposed pieces of
legislation: 1) laws requiring physicians to have admitting privileges within 30 miles of their clinic, 2) laws making abortions
illegal after 12 weeks’ gestation, 3) laws mandating counseling
that fetuses experience pain at 20 weeks’ gestation, and 4) laws
enforcing a waiting period of 72 h. Table 1 displays states where
the laws have been proposed, passed, and implemented. The
purpose of this study was to collect genetic counselors’ professional opinions regarding their perceptions of potential and actual impact abortion legislation has had on the practice of genetic counseling.
Methods
Participants
Genetic counselors with prenatal experience who had practiced within the United States were eligible to participate.
All participants were members of the National Society of
Genetic Counselors.
Instrumentation
The survey consisted of multiple choice, Likert scale, and freeresponse questions that focused on the participants’ predicted
impact of four pieces of legislation on the field of genetic
counseling. Likert scales ranged from strongly disagree (1), to
neutral (3), to strongly agree (5). Participants were able to skip
any questions and withdraw from the survey at any point. No IP
addresses, names, contact information or other personally identifiable information were collected. Upon submission of a
1060 Cooney et al.
survey, the participant’s responses were uploaded and stored by
SurveyMonkey.com. The survey was distributed in November
2013.
Procedures
Institutional Review Board approval was obtained through the
IRB Committee of the Julia Dyckman Andrus Memorial
(November 6, 2013). The survey was administered through
SurveyMonkey and distributed electronically through all members of the National Society of Genetic Counselors (~N = 2960).
Data Analysis
There were 286 survey respondents (9.66% of the NSGC) of
which 7 (2.4%) of the participants were excluded as they did
not meet the inclusion criteria. Five of the excluded participants practiced in Canada, one practiced in Australia, and one
did not have prenatal experience. Two hundred seventy nine
completed surveys were utilized for this analysis.
Data analysis was conducted individually for each question. Descriptive statistics including means, ranges, and frequencies were calculate. Chi-square test was performed on the
yes/no questions regarding changes experienced following
new legislation, a total of 15 4 × 2 Chi square tests were
run. The percent Byes^ from the Northeast was used as a
baseline to compare to the other regions. These specific legislations were not proposed in any Northeastern states. The
qualitative responses were distributed into categories following grounded theory methodology (Charmaz 2006) with a
98% concordance between author and an internal reviewer.
For relevant questions, responses were grouped by geographic regions both to protect anonymity of the counselors
and to compare regions based on the number of proposed
abortion laws. Four regions were defined using the division
delineated by the United States Census: Northeast (ME, NH,
VT, MA, RI, CT, NY PA, NJ), Midwest (WI, MI, IL, IN, OH,
MO, ND, SD, NE, KS, MN, IA), South (DE, MD, DC, VA,
WV, NC, SC, GA, FL, KY, TN, MS, AL, TX, AK, LA), West
(ID, MT, NV, UT, CO, AZ, NM, AK, WA, WY, OR, CA, HI).
Results
Demographics
The majority of respondents were female 96.4% (n = 268)
with mean of 8.7 (n = 277; range from 0 to 33) years of
experience. The regional distribution of respondents was: 63
from Midwest, 64 from Northeast, 68 from the South and 78
from the West. Of note, 6 participants did not identify with one
of the four regions.
Professional Assessment
Likert scale questions were used to gauge responses to questions concerning counselors’ opinions about the potential and
perceived impact of anti-abortion legislation on patient care.
Table 2 displays the data for responses to questions about
hypothetical impact of legislation. There were no statistically
significant differences in opinions of genetic counselors
across the four regions. In general, genetic counselors did
not agree with the proposed legislation and they did predict
these laws will increase stress for both the patients and providers. For example, participants agreed making abortion illegal after 12 weeks will place additional stress upon their patients (4.60 ± 0.68) and will limit the options that a genetic
counselor can provide (4.75 ± 0.57).
Yes and no questions were included to assess changes perceived in the past 12–24 months. These survey items examined
changes in the behavior of patients, colleagues, hospital administration, changes in options available to patients, and changes
in counseling sessions. Respondents answering Byes^ to any
question were offered the option of commenting further.
Responses to yes and no questions are presented in Table 3.
The majority of perceived changes were reported by counselors
practicing in the South and Midwest regions. Counselors in
these regions observed that these laws impacted their patients,
colleagues, access to second trimester abortions, and counseling
sessions.
Participants provided a total of 215 open-ended responses
to five open ended questions. Each response was grouped into
1 of 7 categories. The themes were defined as patient’s
Table 1 Legislation by region
Northeast South Midwest West
Admitting privileges AL*, MS*, TN*, TX* KS, ND*, WI* UT
Counseling- Fetal pain AK, GA, LA, OK, TX IN, KS, MN, MO, SD AZ, UT
Waiting periods; 2 separate
trips to the clinic
LA, MS, TX, VA IN, MO, OH, SD*, WI AZ, UT
Abortion bans after 12 weeks AR* ND*
The survey distributed focused on the four pieces of legislation described in the Introduction to this article This
table outlines where the laws have been proposed as of March 1, 2014
* Law has been challenged and is currently under appeal
Genetic Counselor’s Perceptions of the Impact of Abortion 1061
Table 2 Genetic counselor respondents’ professional opinion on four abortion laws by region
Legislations requiring doctors to have admitting privileges Northeast M South M Midwest M West M Total M
Limits patients’ access to clinics that perform abortions 3.26 ± 1.24 (n = 50) 3.48 ± 1.46 (n = 50) 3.6 ± 1.14 (n = 49) 3.34 ± 1.33 (n = 59) 3.42 ± 1.30 (n = 211)
Places additional stress upon my patient 3.18 ± 1.24 (n = 50) 3.48 ± 1.41 (n = 50) 3.5 ± 1.05 (n = 48) 3.42 ± 1.16 (n = 59) 3.42 ± 1.22 (n = 210)
Limits the options I can provide 2.96 ± 1.19 (n = 50) 3.36 ± 1.14 (n = 50) 3.36 ± 1.18 (n = 50) 3.22 ± 1.31 (n = 59) 3.22 ± 1.29 (n = 212)
Ensures my patient receives appropriate care in the event of
a major complication
3.18 ± 1.08 (n = 50) 2.9 ± 1.28 (n = 50) 3.02 ± 1.2 (n = 50) 2.81 ± 1.22 (n = 59) 2.97 ± 1.20 (n = 212)

Improves patient safety 3 ± 1.12 (n = 50)
Negatively impact my ability to be a patient advocate 2.96 ± 1.17 (n = 49)
Personal opinion of this legislation
Making abortion illegal after 12 weeks
Limits the options I can provide
2.6 ± 1.08 (n = 50)
4.86 ± 0.41 (n = 49)
Negatively impacts my ability to be a patient advocate 4.45 ± 0.91 (n = 49)
Prevents access to treatment 4.59 ± 0.81 (n = 49)
Places additional stress upon my patient 4.8 ± 0.45 (n = 49)
Impacts how I counsel 4.67 ± 0.59 (n = 49)
Personal opinion of this legislation
Requiring a patient to wait 72 h before having an abortion
Limits the options I can provide
1.06 ± 0.24 (n = 49)
Northeast
3.5 ± 1.21 (n = 50)
Negatively impacts my ability to be a patient advocate 3.2 ± 1.23 (n = 50)
Prevents access to treatment 3.65 ± 1.17 (n = 49)
Places additional stress upon my patient 4.44 ± 0.54 (n = 50)
Impacts how I counsel 3.74 ± 1.13 (n = 50)
Personal opinion of this legislation 1.56 ± 0.79 (n = 50)
Requiring the doctor to inform the patient that fetuses experience pain after 20 weeks
Limits the options I can provide 4.78 ± 0.42 (n = 50)
Negatively impacts my ability to be a patient advocate
Negatively affect my patient’s reproductive freedom
Ensures proper care of the fetus
2.84 ± 1.28 (n = 50)
4.02 ± 1.12 (n = 49)
2 ± 1.10 (n = 50)
Is needed for proper informed consent 1.88 ± 0.93 (n = 50)
Personal opinion of this legislation 1.64 ± 0.81 (n = 50)

n = 50) 2.74 ± 1.26 (n = 50) 2.57 ± 1.23 (n = 58) 2.74 ± 1.21 (n = 211)
n = 50) 3.12 ± 1.06 (n = 50) 2.93 ± 1.2 (n = 59) 3.03 ± 1.19 (n = 211)
n = 50) 2.47 ± 1.11 (n = 49) 2.14 ± 1.12 (n = 59) 2.38 ± 1.14 (n = 212)
n = 50) 4.8 ± 0.4 (n = 51) 4.76 ± 0.43 (n = 59) 4.75 ± 0.57 (n = 211)
n = 50) 4.37 ± 0.94 (n = 51) 4.44 ± 0.88 (n = 59) 4.38 ± 0.99 (n = 211)
n = 49) 4.54 ± 0.83 (n = 51) 4.61 ± 0.74 (n = 59) 4.60 ± 0.94 (n = 210)
n = 50) 4.7 ± 0.65 (n = 50) 4.78 ± 0.42 (n = 59) 4.70 ± 0.68 (n = 210)
n = 50) 4.67 ± 0.78 (n = 51) 4.64 ± 0.58 (n = 59) 4.60 ± 0.76 (n = 211)
n = 50) 1.3 ± 0.68 (n = 50) 1.12 ± 0.50 (n = 58) 1.21 ± 0.65 (n = 209)
South Midwest West Total
n = 50) 3.64 ± 1.15 (n = 51) 3.6 ± 1.16 (n = 59) 3.58 ± 1.18 (n = 212)
n = 50) 3.55 ± 1.14 (n = 51) 3.36 ± 1.10 (n = 59) 3.37 ± 1.17 (n = 212)
n = 50) 3.9 ± 1.04 (n = 51) 3.77 ± 1.10 (n = 59) 3.78 ± 1.15 (n = 211)
n = 50) 4.43 ± 0.67 (n = 51) 4.42 ± 0.63 (n = 59) 4.42 ± 0.71 (n = 211)
n = 49) 3.76 ± 0.91 (n = 50) 3.71 ± 1.34 (n = 58) 3.71 ± 1.06 (n = 209
n = 50) 1.96 ± 0.94 (n = 50) 1.75 ± 1.09 (n = 59) 1.74 ± 0.96 (n = 211)
n = 50) 4.59 ± 0.57 (n = 51) 4.62 ± 0.49 (n = 59) 4.60 ± 0.62 (n = 212)
n = 50) 2.61 ± 0.80 (n = 51) 2.53 ± 1.05 (n = 59) 2.65 ± 1.09 (n = 212)
n = 50) 3.92 ± 1.04 (n = 51) 3.81 ± 1.20 (n = 59) 3.87 ± 1.15 (n = 211)
n = 50) 2.16 ± 0.88 (n = 51) 1.9 ± 0.99 (n = 59) 2.01 ± 1.01 (n = 212)
n = 50) 2.24 ± 1.03 (n = 51) 1.92 ± 1.10 (n = 59) 2.04 ± 1.08 (n = 212)
n = 50) 1.78 ± 0.95 (n = 50) 1.66 ± 0.94 (n = 59) 1.69 ± 0.90 (n = 211)
This table summarizes the mean scores of the respondents’ opinions per question by region Scale: 1= Strongly Disagree, to 3=Neutral, to 5 = Strongly Agree
1062 Cooney et al.
Table 3 Genetic counselor participants’ perceived changes in behavior in the workplace and in patient care by region
Total Northeast South Midwest West
From Patients
Yes 18 1 9 6 2
No 179 46 38 42 53
n 197 47 47 48 55
Chi-square (3) =
11.11, p<. 01.
% of noticed change 9.1 2.1 19.1 12.5 3.6
From Colleagues
Yes 33 4 19 8 2
No 164 44 28 39 53
n 197 48 47 47 55
Chi-square (3) =
28.11, p<.001
% of noticed change 16.8 8.3 40.4 17.0 3.6
Counseling Sessions
Yes 22 1 13 5 3
No 174 47 33 42 52
n 196 48 46 47 55
Chi-square (3) =
19.28, p<.001
% of noticed change 11.2 2.1 28.3 10.6 5.5
Hospital Administration
Yes 7 0 4 3 0
No 188 47 42 44 55
n 195 47 46 47 55
Chi-square (3) =
8.32, p<.05
% of noticed change 3.6 0.0 8.7 6.4 0.0
Hospital or Clinic Policy

Yes 15 0 10 2 3

No 179 46 36 45 52
n 194 46 46 47 55
Chi-square (3)
=17.70, p<.001
% of noticed change 7.7 0.0 21.7 4.3 5.5
Impact on patients
Yes 19 1 8 7 3
No 140 41 28 34 37
n 159 42 36 41 40
Chi-square (3) =
9.04, p<.05

% of noticed change 11.9 2.4 22.2 17.1 7.5

Genetic Counselor’s Perceptions of the Impact of Abortion 1063
Table 3 (continued)
Limitation to 1st trimester
abortions
Yes 24 3 6 10 5
No 134 38 29 32 35
n 158 41 35 42 40
Chi-square (3) =
4.72, p = .19
% 15.2 7.3 17.1 23.8 12.5
Noticed in the past 12-24
months
Yes 4 0 1 3 0
No 153 41 33 39 40
n 157 41 34 42 40
Chi-square (3) =
5.71, p = .10
% of noticed change 2.5 0.0 2.9 7.1 0.0
Limitations to 2nd trimester
abortions *
Yes 83 13 25 31 14
No 76 29 10 11 26
n 159 42 35 42 40
Chi-square (3) =
25.39, p < .001
% of noticed change 52.2 31 71.4 73.8 35
Noticed in the past 12-24
months *
Yes 30 3 13 9 5
No 127 39 21 32 35
n 157 42 34 41 40
Chi-square (3) =
13.28, p<.01
% of noticed change 19.1 7.1 38.2 22.0 12.5
Compared to 1 year ago, do your
patients report having to travel
further to receive appropriate
care
Yes 16 2 6 5 3
No 141 39 28 37 37
n 157 41 34 42 40
Chi-square (3) =
3.78, p = .29
% of noticed change 10 4.9 17.6 11.9 7.5
Compared to 1 year ago, do your
patients experience delays due to
waiting periods
Yes 11 0 3 6 2
No 145 40 32 35 38
n 156 40 35 41 40
Chi-square (3) =
7.01, p = .07
% of noticed change 7.1 0.0 8.6 14.6 5.0
1064 Cooney et al.
resistance, doctor’s resistance, fewer options, provider stress,
legislation discussion, more direct about timing, and revisiting
guidelines. The theme of Bpatient’s resistance^ included
responses in which the patient was less open to discussion
termination during the session. The theme of Bdoctor’s
resistance^ refers to providers that were less willing to perform terminations. The theme of Bfewer options^ encompasses the counselor’s inability to offer an abortion as an option due to time restraints, increase in expense, and closure of
nearby clinics. The theme of Bprovider stress^ summarizes the
concerns expressed by genetic counselors about increasing
patient trauma and/ or increasing the challenges in coordination of patient care. BLegislation discussion^ and Bmore direct
about timing^ are two themes that characterized expressed
changes in counseling style wherein more of the counseling
session is spent discussing the new pieces of legislation or the
timing of test results and options. The theme of Brevisiting
guidelines^ includes expressed changes in practice such as
offering earlier anatomy scans or having patients sign the consent form for an abortion in order get the process started even
if the patient is not 100% decided. The other responses fit
under the theme of Bnot applicable^ (N/A) which included
statements such as: no longer work in prenatal, no longer see
patients, and legislation has not changed in my state. The data
were not stratified by region. Data pertaining to responses by
theme are presented in Table 4. Located in Supplemental
Materials, Appendix, are the statements provided by respondents organized according to the identified themes. A few
illustrative quotes are included in the discussion section.
Discussion
Professional Opinion
Professional opinions on legislation affecting abortion were
consistent among respondents across all regions.
Respondents, as a group, were neutral towards the impact of
legislation requiring doctors performing procedures to have
admitting privileges within 30 miles of the clinic, and agreed
that making abortions illegal after 12 weeks would negatively
impact genetic counseling sessions by increasing patient
stress, preventing access to treatment, and limiting options
for patients. In all regions, participants responded negatively
to legislation requiring the doctor to inform the patient that
fetuses experience pain after 20 weeks’ gestation. The
Table 3 (continued)
Have any of your patients been
impacted by the laws regarding
mandatory counseling
Yes 19 3 4 9 3
No 135 36 30 32 37
n 154 39 34 41 40
Chi-square (3) =
5.16, p = .16
% of noticed change 12.3 7.7 11.8 22.0 7.5
Patients opt out of 1st trimester
screening
Yes 1 0 0 1 0
No 147 39 35 35 39
n 148 39 35 36 39
Chi-square (3) =
3.14, p =.63
% of noticed change 0.68 0.0 0.0 2.8 0.0
Patients opt out of 2nd trimester
screening
Yes 11 3 3 3 2
No 139 34 32 36 37
n 150 37 35 39 39
Chi-square (3) =
.39, p = .94
% of noticed change 7.3 8.1 8.6 7.7 5.1
Questions that had significant regional differences are highlighted in the table. All regions were compared to the Northeast
Genetic Counselor’s Perceptions of the Impact of Abortion 1065
counselors on average, expressed disagreement that this law
was necessary for proper informed consent, or that it would
ensure proper care of the fetus. Additionally, counselors
tended to agree that legislation requiring patients to wait
72 h would increase patient stress, suggesting they are critical
of this type of legislation. Across all regions, participants’
responses suggest that genetic counselors, consistent with
the values expressed by multiple NSGC position statements,
support reproductive freedom, believe in offering proper informed consent, and are strong advocates for the patient’s
decision, whatever that may be.
Regional Differences
As a group, the majority of respondents did not notice any
changes in patient care or in workplace attitudes during the
past 12–24 months, a time frame during which a substantial
number of new laws restricting abortions were passed.
However, when analyzed by region, significantly more changes were noted in the South and the Midwest, where the majority of new legal restrictions affecting access to abortion
have been enacted (Table 1).
A higher percentage of respondents from the South and
Midwest noticed changes in their patients’ emotional state
since these laws have been passed: 19.1% of those in the
South and 12.5% of those in the Midwest as compared to
2.1% of those in the Northeast and 3.6% of those in the
West (p < 0.05). Some participants stated in response to open
ended questions that their patients have had an increase in
anxiety, fear, and frustration in the last 12–24 months. One
respondent noted that patients’ have Bmore anxiety when
coming in at 20+ weeks, having to go out of state for an
abortion, having to have more invasive testing over screening
tests due to limits in abortion^ [Responder #53 (West)].
Another counselor noticed that patients have, Bmore questions, more fear about limited options and more focus on
time^ [Responder #144 (Midwest)].
Among all counselors, 11.9%, noted that the legislation has
had a direct impact on their patients, including increased cost,
increased travel for terminations, and in some cases the inability to have a termination. Ten percent of respondents reported
that their patients have to travel further to receive appropriate
care. One genetic counselor stated BSome patients have to
travel out of state to have a termination, which adds unnecessary complications at a difficult time. Patients have a hard
enough time deciding to end a pregnancy and once that
decision is made it is VERY hard for them to wait
another 72 hours before they can do anything^ [Responder
#232 (Northeast)]. Another stated BI have had 3 patients in the
last 2 weeks go out of state, one even out of the country to
have a procedure that cost them over 15,000$ [sic]. Other
patients had to continue the pregnancy due to lack of
funding^ [Responder #270 (Northeast)]. Although, these
comments are anecdotal, they highlight the impact of
difficulties in access to abortion on patient care and
the challenges patients are facing.
Table 4 Genetic counselors’ open responses to changes noticed since abortion legislation was enacted
Changes noticed
From patients
(n = 200)
In colleagues
(n = 200)
In counseling
session (n = 198)
In hospital
admin. (n = 197)
In hospital
policy (n = 196)
Example quote
No 182 167 176 176 181
Yes 18 33 22 7 15
Patient’s resistance 3 Patients are less likely to talk freely about
their feelings and options in the event
an anomaly is found
Doctor’s resistance 2 2 Physicians are less willing to be involved
with termination procedures
Fewer options 13 5 22 2 Having to tell patients they may have
difficulty obtaining an abortion when
an anomaly is found
Provider stress 19 1 Concern about impact on already
traumatized patients anger and frustration
Legislation
discussion
2 2 Some have wanted to move the NSGC’s
AEC to a state more Bfriendly^ to TOP
More direct
about timing
17 Greater emphasis on TAT for ordered tests;
and for abnl sonos-making decisions
without lab results
Revisiting
guidelines
4 3 9 Consider anatomy scans at 18–20 weeks
vs 20–22
1066 Cooney et al.
Statistically significant differences in reported impact on
counseling sessions among the four regions were observed
(p < .05): 2.1% of those in the Northeast, 5.5% in the West,
28.3% in the South and 10.6% in the Midwest noticed changes. Overall, counselors reported spending more time
discussing the new legislation and reported being more directive about the time frame allotted for a patient to make a
decision about termination. Genetic counselors are trained to
be non-directive; the new laws may impact this core component of genetic counseling. A common statement among the
respondents was that their sessions: Balways have had to discuss timing and possibility of being too late.^ As counselors
become more concerned with timing, more pressure is put on
patients to make decisions: BMy state does have a 72 hour
consent law and we are required to mention fetal pain. I feel
I have to push them to decide about termination sooner
if they are close to the age limit and need to sign the
consent^ [Responder #143(South)]. Although in all regions the majority of respondents reported no impact of
new abortion laws on genetic counseling sessions, the
concerns expressed by those who did see a change suggest that decreased access to abortion may force counselors to adopt a more directive manner in response to a
reduced time frame for decision making.
Regional changes were noticed in the behavior of
colleagues; 40.4% of those in the South and 17.0% of
those in the Midwest as compared to 8.3% of those in
the Northeast and 3.6% of those in the West noticed an
increase in provider stress from their colleagues (p < .05).
Many of the respondents stated that their colleagues were
BConcerned that services will not be available to patients
when needed^ [Responder #11 (South)]. ACOG and ACMG
both publicly voiced similar concerns about how these laws
are impacting patient care.
There were no other statistically significant differences in
themes among open-ended responses when considered by region. However, of note, 11 respondents mentioned patients
experiencing delays due to waiting periods and 6 of those
respondents were from the Midwest. Similarly, 19 responses
mentioned patients impacted by the laws requiring mandatory
counseling, and of those 9 were from the Midwest. Many
states in the Midwest are included in the group of states with
the strictest restrictions on abortion.
Second Trimester Abortion
Just over half of all of respondents (52.2%) reported
experiencing changes in the options available for patients in
terms of second trimester abortions. Further analysis showed
the majority of perceived changes were reported by counselors
from the South and Midwest regions. There were statistically
significant differences noticed in the South (71.4%) and
Midwest (73.8%) compared to the Northeast (31.1%) and
the West (35.0%) (p < 0.001). Reports of increasing limitations in options for second trimester abortions in the last 12–
24 months were region-specific as well: in the South 38.2%
and in the Midwest 22.0% of all respondents cited increased
difficulty, as compared to 7.1% in the Northeast and 12.5% in
the West (p < 0.05). This regional difference in perceived
limitations to access coincides with the passing of restrictive
legislation. Statistically significant differences in reported
changes to hospital or clinic policy among the four regions
were observed (p < .001): 7.7% of those in the Northeast, 0%
in the West, 21.7% in the South and 4.3% in the Midwest
noticed changes. The specific policy changes were not asked.
However, some respondents mentioned in open-ended responses a change in policy guidelines for the timing of
the anatomy scan: BWe have been debating bringing
patients in for their anatomy scans earlier (18 weeks
compared to 20), with the thought that we would be
able to catch major malformations earlier, even if more
patients will have to be brought back for a second anatomy scan a few weeks later due to porer [sic] image
quality^ [Responder # 133 (Midwest)]. This raises the possibility that providers may alter patient care guidelines to deal
with the effects of new laws.
Limitations of the Study
This study was designed as a preliminary investigation. The
study was limited by a small sample size, as only 9.66% of
members of the National Society of Genetic Counselor answered the survey. Because this is an exploratory study we
did not control for family wise error. The data were only stratified by region and not by individual state. This was done to
preserve anonymity, as several of the states that have experienced the greatest changes in relevant legislation have the
fewest number of genetic counselors – so few, in fact, that
their identity might be inferred. The survey did not require
each participant to answer all questions; therefore, the number
of responses differs for each question. The survey items inquired about genetic counselors’ perspectives on the potential
and perceived impact of these abortion laws; therefore, certain
survey items are difficult to interpret. Also, the data were not
stratified by years of experience for the genetic counselors.
Possibly, the number of new counselors in certain regions
may have impacted responses to questions looking at change
over time.
Additional Studies
The comments provided by respondents suggest potential
areas of study. For example, respondents suggested genetic
counselors should be more involved in legislation reform.
Newer legislation is likely to result in closure of additional
abortion services. Further studies are needed to provide
Genetic Counselor’s Perceptions of the Impact of Abortion 1067
measurable benchmarks that will help us determine the extent
to which legal and policy changes impacting access to genetic
testing and terminations are affecting patient care. A followup study might examine policy changes made by clinics and
hospitals to adapt to the new legislation. Similarly, another
potential area of research would be to assess patient stress
and consider its potential impact on pregnancy outcomes.
The Supreme Court decision in Whole Woman’s Health v.
Hellerstedt will block the implementation of laws that would
have forced many of the remaining abortion providers in
Texas to close, and it is likely to diminish the impact of
existing and proposed legislation in many other states as well.
The last decade has seen a dramatic increase in the number
and type of restrictions to abortion access in the South and
Midwest; whether this Supreme Court decision proves a turning point in that pattern is yet to be seen. In light of these
unknowns, it is important to document the effect of changing
laws and attitudes on the experience of the genetic counseling
patients in the prenatal setting.
Conclusion
The goal of this exploratory study was to evaluate genetic
counselor’s perceptions of specific abortion legislation.
Overall, genetic counselors in all regions reported similar
views on legislation affecting abortion. Most of the respondents were neutral regarding provisions, but were concerned
that their ability to be a patient advocate would be negatively
affected and that there could be fewer options to offer their
patients if certain laws were implemented.
The majority (91%) of counselors have not noticed changes
in patient care since these laws were enacted. However, regionally, a larger percentage of the counselors in the South and
Midwest regions have experienced more changes that have
affected patients, colleagues, and their counseling style. The
majority of counselors nationwide have experienced an increase in restrictions affecting second trimester abortions, with
significantly more counselors from regions impacted by new
legislation reporting increased difficulty in obtaining access to
second trimester abortions for their patients.
Compliance with Ethical Standards
Conflict of Interest Caitlin Cooney, Laura Hercher, and Komal Bajaj
declare they have no conflict of interest.
Human Studies and Informed Consent All procedures followed were
in accordance with the ethical standards of the responsible committee on
human experimentation (institutional and national) and with the Helsinki
Declaration of 1975, as revised in 2000. Informed consent was obtained
from all patients for being included in the study.
Animal Studies No animal studies were carried out by the authors for
this article.
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