In August 2011, Liz Read-Katz was living in Texas, nearly 20 weeks pregnant, and was, in the words of the testimony she supplied to Planned Parenthood Advocates in Missouri, “ecstatic but scared as most soon-to-be parents are.” Then her doctor told her that her blood work revealed she had a one-in-ten chance of having a child with trisomy 18. Also known as Edwards syndrome, trisomy 18 is a chromosomal condition that, according to the National Institutes of Health, causes “many individuals … [to] die before birth or within the first month.” This began the cascade of events that led Read-Katz to consult with a genetic counselor for additional information to support her during her very much wanted pregnancy.
After receiving information from a perinatologist, a specialist in high-risk pregnancies, who suggested the chance of trisomy 18 was greater than one in ten, Read-Katz conferred with a genetic counselor while considering whether to have an amniocentesis
. “ [The genetic counselor] said several times that it wasn’t her position to tell me whether to have an amniocentesis or not,” Read-Katz told Rewire . The counselor provided her with knowledge of not just what the tests would entail and reveal, but also that her perinatologist had a rate of complications from amniocentesis that is lower than the national average. She explained that this information provided some measure of comfort . “It was very reassuring [to know that] no matter what choice we made, we wouldn’t be doing any additional harm.”
In the context of prenatal care, a genetic counselor moves genetic tests between doctors, labs, and sometimes more labs, eventually receiving results, interpreting them, and discussing them with patients. More than 2,000 individuals work as genetic counselors in the United States, according to the National Society of Genetic Counselors.
“Her role was to tell me … here are your test results, this is what they mean, and then she was the one who actually called me and told me that the amniocentesis came back as trisomy 18,” Read-Katz said. “I can almost do it verbatim. I could tell by the tone of her voice that she was sad for me and that she wanted to make sure that I was at home, that I wasn’t driving around. ‘I’m very sorry, but it does look like your child has trisomy 18,’ she said. I said, ‘I figured as much.’ ‘Well,’ she said, ‘I didn’t.’ She was very compassionate and asked if I had any questions. … I already knew. She said, ‘Yes, trisomy 18 is incompatible with life.’ She was able to provide me with a couple of other options in case my doctor wasn’t going to be able to help.”
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Read-Katz made the heartbreaking decision she and her husband found best. Within a few days, she was induced to deliver. “I know I had an abortion,” she said. “I know that.” No one wants to be confronted with the type of parenting decision Read-Katz had to face, and yet reality is cruel and unrelenting. At some point, some pregnancies will appear to diverge from healthy development. Genetic testing performed and interpreted with the help of a genetic counselor is a way to get the facts.
The integrity of counseling received by pregnant women could, however, change under what could become a national effort to include “conscience clauses” in state-level legislation licensing genetic counselors. Just such legislation, with a clause written by ardent opponents of abortion rights, was signed into law by Virginia Gov. Terry McAuliffe, who months before had pledged to be a “brick wall” against incursions on reproductive rights.
In short, genetic counselors in Virginia who object to abortion may now prevent women from learning the results of their genetic tests before their pregnancies progress to a point when legal abortion is impossible to obtain. “I’m beyond words,” Liz Read-Katz told Rewire. “What is the purpose of a genetic counselor if they’re not going to give you any information?”
Virginia’s Genetic Counseling Licensure Law
On March 20,
Gov. McAuliffe approved a new law to license genetic counselors over the pleas of advocates for reproductive rights. Effective July 1, Virginia will offer licenses to genetic counselors. Much of the language is similar to model legislative provisions published by the National Society of Genetic Counselors, with the notable exception of a broad “conscience clause”:
Nothing in this chapter shall be construed to require any genetic counselor to participate in counseling that conflicts with their deeply-held moral or religious beliefs, nor shall licensing of any genetic counselor be contingent upon participation in such counseling. Refusal to participate in counseling that conflicts with the counselor’s deeply-held moral or religious beliefs shall not form the basis for any claim of damages or for any disciplinary or recriminatory action against the genetic counselor, provided the genetic counselor informs the patient that he will not participate in such counseling and offers to direct the patient to the online directory of licensed genetic counselors maintained by the Board.
As reported previously by Rewire, the bill and conscience clause was championed by Sen. Janet Howell (D-Reston), who was heralded in 2012 as a national reproductive rights leader for attempting to amend an anti-choice ultrasound bill, now law, with a requirement that would subject men to rectal examinations. A member of Sen. Howell’s staff told the president of NARAL Pro-Choice Virginia, the anti-choice Family Foundation drafted the clause.
Based in Virginia, the Family Foundation is recognized as a “State Family Policy Council” by the Family Research Council to “accomplish at the state level what the Family Research Council does at the national level.” (The Southern Poverty Law Center classifies the Family Research Council as a hate group.)
According to the Family Foundation’s website, lobbyists for the genetic counselors approached them prior to introducing a bill, which led to the conscience clause:
The story behind this amendment goes back a few months. This past summer, the lobbyists for the genetic counselors approached The Family Foundation with a draft bill to license genetic counselors in Virginia. We appreciated them coming to us prior to session to discern our impression of the bill and to see if we had any concerns. We decided to remain neutral on the topic of licensing genetic counselors, but we strongly encouraged the addition of a conscience clause to protect them from being forced to participate in counseling against their deeply held moral or religious beliefs.
The genetic counselors agreed to the conscience language and a bill was drafted that all parties agreed upon.
Gov. McAuliffe signed this conscience clause into law twice. First, the governor signed HB 612 into law and then shortly after issued a recommendation to amend the conscience clause in its companion bill, SB 330, that would have in part required genetic counselors to offer timely notice of refusals to provide care and make referrals to another qualified counselor. That recommendation failed to pass.
With HB 612 already law, Gov. McAuliffe was then urged by groups including the American Civil Liberties Union (ACLU) of Virginia and NARAL Pro-Choice Virginia to veto SB 330 for symbolic purposes. The governor neither vetoed the bill nor left it unsigned; he signed a genetic counseling licensure bill with a sweeping conscience clause into law for a second time on March 20.
Gov. McAuliffe’s office did not return a call asking why he signed a bill containing a conscience clause he wished to change; the National Society of Genetic Counselors did not respond to an email asking for comment on whether it has been talking about conscience clauses and if it might include model language for use in future state-level bills; and lobbyist Aimee Perron Seibert of the Hillbridge Group in Virginia did not respond to an email asking why a conscience clause was added to the Virginia law and how the specific language evolved.
The Role of the Genetic Counselor
Genetic counselors can play a pivotal role in the provision of prenatal care. According to the National Society of Genetic Counselors website:
Genetic counselors work with other members of the health care team providing information and support to individuals and families concerned with genetic disorders or birth defects. … [They] review available testing options and discuss management. … They also serve as patient advocates and refer individuals and families to community or state support services as appropriate.
A genetic counselor must obtain a master’s degree from an accredited program and then apply and sit for an examination in order to be eligible for certification by the American Board of Genetic Counseling.
“They have a difficult job, no doubt,”
Anthony Gregg, vice president of clinical genetics for the American College of Medical Genetics and Genomics, told Rewire. He said that in the course of his practice as an MD clinical geneticist, genetic counselors help his medical teams track specimens through a process that is similar to a maze, including shepherding them through specialty tests at different labs, managing logistics and results as they come back into the office, and then helping with the delivery of results to patients and providers.
“Genetic counselors have been fighting for licensure state by state because it gives them greater professional standing and helps them with billing,” Alexandra Minna Stern, author of Telling Genes: The Story of Genetic Counseling in America, told Rewire.
That fight is less than half over. Virginia joins 18 other states listed on the National Society of Genetic Counselors website with laws licensing genetic counselors. Only two other states, Nebraska and Oklahoma, have a conscience clause incorporated into genetic counseling laws, and unlike Virginia’s new law, both are specific to abortion
and therefore narrower in impact—these laws could protect a genetic counselor who did not provide accurate information that might lead to an abortion, for example, but can not be used to discriminate against a lesbian seeking fertility services.
A state law like Virginia’s should be watched, however: Virginia’s law sets a stricter precedent because it affects more than just abortion cases, while also, like Nebraska’s and Oklahoma’s, protecting counselors from lawsuits for refusal to provide services and imposing no requirement of timely notification of a refusal to provide services. And this issue should be viewed beyond the state level, as conscience clauses could become the new normal for the roughly two-thirds of remaining states that we can expect to be targeted for licensure bills.
“This is unprecedented,” said Minna Stern, referring to the insertion of conscience clauses into genetic counseling licensure laws. “This smacks against the very ethos of genetic counseling and what genetic counselors do, which is that they provide non-directive genetic counseling that is thoughtful and responsive to whoever the client is who comes in their door. Their job is definitely not to have a preconceived notion of whether or not they would respond to someone or to advise them to or not to terminate a pregnancy.”
The Impact of Conscience Clauses for Genetic Counselors
A key part of a genetic counselor’s role in the provision of prenatal care is to impart information about what clues genetic tests performed on potential parents and/or a developing fetus may provide about expected health status in pregnancy and beyond. In this way, a conscience clause for genetic counselors differs from some other conscience clauses that permit doctors to refuse to provide services. It is not akin to a discussion with a doctor who tells patients he or she refuses to perform abortions in any or certain circumstances; it could instead involve entirely omitting discussions, and therefore awareness, of negative medical information based on the genetic information of parents or pertaining to a pregnancy, with the goal of preventing a patient from considering abortion. In other cases, genetic counselors brought in to assist with a patient who is already considering abortion in reaction to conditions made visible by ultrasound could refuse to discuss new information otherwise available via genetic tests.
“When patients are not provided a timely, balanced discussion of their legal options after the return of prenatal test results, fundamental medical principles are violated,” Dr. Gregg of the American College of Medical Genetics and Genomics told Rewire. “The ethical principle of autonomy requires that patients are provided complete and balanced information. … Informed consent is the hub of patient decision-making in medicine.”
“We don’t ask patients to choose without providing all options to them,” he added.
A 2013 statement from Gregg’s organization said the group “strongly opposes legislation that places limits on this access.”
What’s more, genetic counselors shepherd tests and results between various offices before sharing information with doctors and patients. The conscience clauses in both Nebraska and Virginia fail to require that genetic counselors provide timely notification of their refusal to provide services. This means that one individual could effectively block a patient’s access to legal abortion by dragging their feet. For example, routine chromosome analysis can take ten to 14 days for results to be returned, which means that a patient having an amniocentesis around 22 weeks of pregnancy could receive results as late as 23 to 24 weeks.
It is more difficult to obtain an abortion as pregnancy progresses. First, bans on abortion based on gestational age or length of pregnancy are the subject of a concerted push by the right. “There is great interest in limiting abortion at five months of pregnancy,” a spokeswoman for Americans United for Life told Politico in a piece covering the push for 20-week abortion bans. Such a ban was recently rejected by West Virginia Gov. Earl Ray Tomblin, who is anti-choice but called the bill “unconstitutional.” Second, many doctors, nurses, and institutions that provide earlier abortions may have conditions or an outright blanket policy against providing abortions later in a pregnancy. Third, cost increases as time goes on, both for the procedure as well as for travel to providers who may be accessible only by plane.
Liz Read-Katz had her abortion after 19 weeks and five days of pregnancy
. She says the emotional consequences of waiting longer would have been devastating. “I was starting to show, people were asking me when I was due, and I would just cry,” she said. “I was petrified that I would start to feel the baby kicking. I was petrified that would happen.”
A conscience clause for genetic counseling also undermines the status of the medical profession as a whole, argues Susan Berke Fogel, director of reproductive health with the National Health Law Program. Conscience clauses are “not only bad for health-care delivery generally but really disrupt health care,” she said. “Obviously, the health quality implications are devastating. … Most health-care providers are very committed to providing quality care.”
This point of view seems to be shared or at least hinted at in both expected and unexpected quarters. In a position paper called “The Limits of Conscientious Refusal in Reproductive Medicine,” the American Congress of Obstetricians and Gynecologists states, “Conscientious refusals that conflict with patient well-being should be accommodated only if the primary duty to the patient can be fulfilled. … Health care providers have the duty to refer patients in a timely matter to other providers if they do not feel that they can in conscience provide the standard reproductive services that patients request.”
Citizen Link, an affiliate of the anti-choice group Focus on the Family, had this to say in an online post about genetic counseling:
The purpose of a genetic counselor is to help you understand your options and choose the best course of action for you and your family – not to impose certain treatments contrary to your views.
“Strategy of Silence”
As previously noted, the National Society of Genetic Counselors did not respond to an inquiry for comment. While it may appear surprising that a group at the center of the push for licensure laws would not want to weigh in on this story, a deeper look at the past shows there’s nothing new about
the group’s strategy of silence.
In 2009, Amy Goodman of Democracy Now! interviewed Dr. Warren Hern
, who identified himself as a member of the society, about the group and the issue of abortion rights. During their chat, Hern discussed a meeting where Dr. Kenneth Edelin was invited to speak. Dr. Edelin was a noted physician who ultimately saw his manslaughter conviction overturned by the Massachusetts Supreme Court for performing a legal abortion shortly after the Roe decision; he died in 2013. “He was an incredibly eloquent speaker at this meeting,” Hern told Goodman. “And there were many people who were very angry that Dr. Edelin was invited to speak. So, you know, it’s very controversial within that organization.”
During the same show, a genetic counselor who declined to be identified said she had suggested the group issue a statement condemning the murder of Dr. George Tiller by anti-choice terrorist Scott Roeder. The counselor said she was told that
some members of the group had suggested remaining silent. Speaking to Goodman, the counselor said, “There’s this climate of fear now, and it’s because of these extreme extremists, these anti-choice people, that everybody’s even more afraid. And it’s not only just the actual providers, but people who are indirectly related to sort of referring people to these clinics aren’t even willing to admit their involvement. And I think it’s really a shame, because the entire basis of the field of genetic counseling is to help facilitate choice and for people to make decisions that are best for them.”
Where Will The Conscience Clause Go Next?
In a letter to Gov. McAuliffe urging him to veto the senate’s version of the genetic counseling licensure law, the ACLU of Virginia noted that the Family Foundation, which said it wrote the clause, had stated their intention to make this language the default for other professions in the commonwealth. “If genetic counselors can be protected from being forced to violate their conscience, it follows that all other professions should receive equal protection,” the Family Foundation said on its website.
In an email to Rewire, ACLU of Virginia Executive Director Claire Guthrie Gastanaga expressed concern about the conscience clause traveling to other states. “The Family Foundation is part of a strong national network under the umbrella of the Family [Research] Council that does a very good job of touting their successes and seeking to have similar legislation enacted in other states,” she wrote. “Virginia will be held up as a ‘model’ for other states to follow as they consider such licensing bills.”
“We are deeply disappointed that Governor McAuliffe decided to approve this dangerous law which so clearly grants genetic counselors a license to discriminate against their patients,” Tarina Keene, executive director of NARAL Pro-Choice Virginia, said in a statement after McAuliffe signed the senate bill into law.
It wasn’t the first time the governor had upset reproductive rights advocates. While he had pledged to protect reproductive rights throughout his campaign, he sent shock waves through the pro-choice community prior to taking office by choosing to retain former Gov. Bob McDonnell’s secretary of health,
Bill Hazel, who had a hand in the implementation of some of the most notable anti-choice policies of the previous administration, including a forced ultrasound law.
As far as genetic counseling goes, patients in Virginia and advocates in other states will be left to pick up the pieces. “I would suggest to you that this is a clear example of a legislative body and in this case a state governor who signed something without getting all the information before signing it,” Dr. Gregg of the American College of Medical Genetics and Genomics said.
“This is a fundamental problem when legislators step into water that they’re unfamiliar with,” he continued. “They are obligated to become informed. You only become informed by engaging the parties. … They could have called us just as you did, and in 30 minutes they would have gotten more information and changed this from a purely emotional discussion into one that [included] some of the facts and downstream effects.”
CORRECTION: A previous version of this article incorrectly noted that there was only one state with a conscience clause within its law licensing genetic counselors that is specific to abortion. In fact, there are two (Nebraska and Oklahoma). We regret the error.