Check out Amy Goodman of Democracy Now!'s fantastic interview with Nigerian doctor and country director for Ipas, Dr. Ejike Oje, about his testimony at the House Committee hearing on the Mexico City Policy. The policy is also known as the "Global Gag Rule" for its directive that prevents U.S. funded health centers in Latin America, Asia, and Africa from discussing abortion – even mentioning abortion in any context- or referring for abortion services.
The hearing was the first congressional hearing dedicated to the Global Gag Rule and its impact on family planning and reproductive health programs globally. The policy has had an extraordinarily destructive effect on health services for women and families in countries where health clinics are denied much-needed U.S. funds. According to Democracy Now!:
Critics charge that this forces foreign NGOs to choose between vital U.S. assistance for essential family planning services and the real needs of women dealing with unwanted pregnancies. Nigeria has the second highest maternal mortality rate in the world, in large part due to unsafe abortions and lack of access to reproductive healthcare.
Listen to Amy Goodman's interview with Dr. Oje or watch the full testimony here.
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The testimony has some golden nugget moments. Dr. Gillespie, another key witness testifying against the global gag rule, was questioned by a pro-life Senator who started in on a bizarre diatribe about personhood and fetuses; and that most Americans are seeing ultrasounds and "deciding that's a person." Thankfully, Dr. Gillespie cut him off by saying:
"And we can debate that issue. That's our right. We can have this discussion here. But if I were a representative of a foreign NGO, say in Ghana, and I wanted USAID funds, we wouldn't be able to even have this discussion."
In the second part of Rewire’s “Living in the Shadow of Counterterrorism” series, we look at how Muslim families, particularly women, are forced to confront state violence on a daily basis—from living with the stigma of terrorism, to repairing their broken homes, to navigating what they say is a brutal and biased prison system.
This is the second article in Rewire’s “Living in the Shadow of Counterterrorism” series. You can read the other pieces in the series here.
When Virginia native Mariam Abu-Ali was 14 years old, her life abruptly turned upside down. It was 2003, two years after the September 11 attacks and well into an era of counterterrorism tactics that were systematically hollowing out Muslim residents’ civil liberties and constitutional protections in the United States. But the Abu-Ali family never imagined they would be caught up in the dragnet.
Mariam’s then-22-year-old brother, Ahmed Omar, had been studying in Medina, Saudi Arabia, when he was arrested in connection with a series of May 2003 terrorist attacks in Riyadh.
In an interview with Rewire, Mariam says her brother, who was born in Texas, was held in solitary confinement in a Saudi jail for nearly two years without ever being charged with a crime. During that time, Mariam tells Rewire over the phone, there is strong evidence that he was tortured. Although defense expert Dr. Allen Keller, director of the Program for Survivors of Torture at the Bellevue/NYU Hospital, examined Ahmed and testified at his U.S. trial to the evidence of torture, an appeals court eventually ruled that Ahmed’s statements to Saudi interrogators were “voluntary.”
When, after months of legal pressure from his family, he was finally returned to the United States, a court for the Eastern District of Virginia charged him with multiple counts, including conspiring with an Al-Qaeda cell in Medina to carry out terrorist attacks on U.S. soil. Following a trial that permitted the admission of what Mariam called “a coerced confession,” he was eventually sentenced to 30 years in prison, and later re-sentenced to life.
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Yet as legal experts like Elaine Cassel, author of The War on Civil Liberties: How Bush and Ashcroft Dismantled the Bill of Rights, have pointed out, “Nowhere in the indictment [was] Abu-Ali tied to any terrorist event or action”—either in the United States or in Saudi Arabia.
Instead, his case fell under the shadowy material support statutes that have governed much of the United States’ counterterrorism operation in the years since 9/11, under the USA Patriot Act of 2001. This set of laws allows the U.S. government to preemptively prosecute individuals for engaging in terrorism based on their perceived predisposition toward violence, rather than their actions. Over the past 15 years, hundreds of Muslims have disappeared in a warren of these convoluted laws; they are currently locked up in high-security prisons around the country.
A constellation of families, scholars, activists, and civil rights organizations have long challenged the effects of material support charges, as well as the unfair trials and the lengthy and harsh prison sentences that tend to follow them. Over the past few years, they have come together in a campaign called No Separate Justice, an attempt to unite far-flung groups and individuals who are working to dismantle what they say is a parallel and unjust legal system for Muslim residents in post-9/11 America.
Women like Mariam Abu-Ali have been at the forefront of the movement—along with Zurata Duka and Shahina Parveen, whose stories Rewire has previously reported on—advocating on behalf of their loved ones.
In the second part of Rewire’s “Living in the Shadow of Counterterrorism” series, we look at how families, particularly women, are forced to confront state violence on a daily basis—from living with the stigma of terrorism, to repairing their broken homes, to navigating what they say is a brutal and biased prison system.
“Dangerous” Minds, Draconian Measures
Mariam Abu-Ali says her brother’s case represents many of the civil rights violations that have marred the decade and a half since 9/11, a sentiment that is echoed in the final opinion on Ahmed Omar’s case penned by the U.S. Court of Appeals for the Fourth Circuit.
In its unanimous decision to uphold the guilty verdict on nine terrorism-related counts against Ahmed in 2008, the three-judge bench wrote:
Persons of good will may disagree over the precise extent to which the formal criminal justice process must be utilized when those suspected of participation in terrorist cells and networks are involved … the criminal justice system is not without those attributes of adaptation that will permit it to function in the post-9/11 world.
While the opinion does not explicitly state what these “attributes of adaptation” are, studies on counterterrorism indicate they could refer to any number of legal practices that have become normalized since September 11. In particular, they could refer to the use of material support statutes, which have played a significant role in the prosecution of Muslim Americans like Ahmed Omar.
As FBI Assistant Director Gary Bald testified to the Senate Committee on the Judiciary in 2004:
It would be difficult to overstate the importance of the material support statutes to our ongoing counterterrorism efforts. The statutes are sufficiently broad to include terrorist financers and supporters who provide a variety of resources to terrorist networks. The statutes provide the investigative predicate which allows intervention at the earliest possible stage of terrorist planning to identify and arrest terrorists and supporters before a terrorist attack occurs. [Emphasis added.]
In short, material support statutes have enabled federal authorities to prosecute people based on suspicion of what they might do in the future rather than any overt criminal act. The statutes primarily refer to “support” for terrorist networks as weapons, arms training, or direct funding. Prosecutors, courts, and juries, however, have interpreted the laws much more broadly to encompass the sharing of religious or political texts online, casual conversations between friends, or charitable donations to organizations in areas controlled by terrorist groups.
In many instances, material support charges have amounted to nothing more than thought crimes, in which law-abiding Muslim residents have been penalized simply for expressing their religious and political views.
According to a 2014 report by Human Rights Watch, material support cases rose sharply in the decade following the September 11 attacks. Prior to 9/11, just six individuals had been charged under these laws in the United States. In the decade following, 168 of 917 domestic terrorism convictions analyzed by HRW fell under such statutes, accounting for 18 percent of all terrorism-related convictions in that time period.
Even a cursory look at some of these cases is sufficient to grasp the breadth of these laws, which have pushed deep into Muslim communities, tearing through many layers of social fabric along the way.
In 2012, the New York Times published an op-ed by Yale professor Andrew March on the case of Tarek Mehanna, a Pittsburgh-born doctor and community leader who was sentenced to 17 and a half years in prison because his opinions about Islam, expressed online, were deemed a form of material support for terrorist causes.
March wrote in the Times:
As a political scientist specializing in Islamic law and war, I frequently read, store, share and translate texts and videos by jihadi groups. As a political philosopher, I debate the ethics of killing. As a citizen, I express views, thoughts and emotions about killing to other citizens. As a human being, I sometimes feel joy (I am ashamed to admit) at the suffering of some humans and anger at the suffering of others. At Mr. Mehanna’s trial, I saw how those same actions can constitute federal crimes.
March’s op-ed illustrates a frightening truth about material support statutes: They allow for the preemptive prosecution of individuals who have not yet committed a crime but whom the government deems capable of possibly committing a crime in the future.
Other cases, such as the Holy Land Five, demonstrate a pattern in which material support laws have essentially criminalized charitable giving. The case involved the founders of the Holy Land Foundation, a Muslim charity that provided humanitarian aid to the needy, including women and children in Palestine. Though the government concluded that the Holy Land Foundation never directly aided a terrorist organization, it nonetheless prosecuted five of its members for funneling aid through charitable committees into areas controlled by Hamas, a designated Palestinian terrorist group, thereby violating material support statutes. Journalists called the verdict an attack on Islam itself, particularly the practice of zakat, which mandates that Muslims allocate a portion of their wealth or earnings for charitable causes.
From its very inception, the No Separate Justice (NSJ) campaign has fought this flawed notion, with mothers and sisters of the accused becoming the movement’s most prominent spokespeople. NSJ initially coalesced around the case of a Muslim American named Fahad Hashmi.
Hashmi had been working toward a master’s degree in international relations at London Metropolitan University when he was arrested at Heathrow Airport in 2006. In 2007 he became the first U.S. citizen to be extradited following the loosening of restrictions around the process after 9/11, according to an article by Jeanne Theoharis, a political science professor at Brooklyn College and co-founder of the NSJ campaign, who taught Hashmi as an undergraduate.
He was initially held in pretrial solitary confinement at the Metropolitan Correction Center (MCC) in downtown Manhattan. MCC’s notoriety was cemented in a 2010 New York Timesarticle that quoted a former Guantanamo detainee, who was also held at the MCC, as saying the Cuban military prison was “more pleasant” and “more relaxed” than the federal detention facility in New York City.
Hashmi was also subjected to special administrative measures, government restrictions on a terror suspect’s communications that amount to a gag order on the case and their conditions of confinement. Advocates say these were drastic measures relative to the charges against him: Hashmi’s only crime, according to Theoharis’ article, was allowing an acquaintance to spend a night in his apartment, an acquaintance who would later deliver a suitcase of raincoats and waterproof socks to Al Qaeda members. This same acquaintance would later become a cooperating witness for the government in exchange for a more lenient sentence, and testify against Hashmi in a trial that ended with a guilty verdict and a 15-year sentence.
Stunned by Hashmi’s conditions of confinement, a group called Theaters Against War linked arms with Educators for Civil Liberties and the Muslim Justice Initiative to host weekly vigils outside the MCC in 2009. These gatherings, which continue to this day, form the nucleus of the NSJ movement.
“We wanted to build a coalition so people from different backgrounds could bring their institutional expertise and moral conscience into the same arena as family members, and create a space where people could express outrage at what was happening,” Sally Eberhardt, one of NSJ’s earliest organizers, tells Rewire.
At first, larger civil liberties groups kept their distance, possibly because “this isn’t exactly the most funder-friendly issue in the world,” Eberhardt suggests. But advocates persisted, holding candlelight protests even on the bitterest winter nights, singing songs and chanting poems in the shadow of the detention center. Those intimate gatherings formed the basis of what is now a national movement, encompassing multiple organizations and dozens of families.
Two outspoken leaders are the Sadequee sisters, Bangladeshi Americans who have been among the strongest advocates of prisoners’ rights and the most public critics of the government’s targeting of Muslim men—including their brother, Shifa.
From the Streets to the Prayer Rug: Pushing Back Against State Violence
Ehsanul “Shifa” Sadequee was born in Virginia and grew up in Atlanta, Georgia, the youngest of four siblings in a Bangladeshi-American family. According to his sisters, he was a curious and exceptionally kind child, who by his early teens had grown into a devout and diligent religious scholar.
In 2005, when he was just 18 years old, Shifa traveled to Bangladesh. In April 2006 he got married, but 12 days after his wedding, Bangladeshi authorities took and detained him, apparently at the behest of the U.S. government, for allegedly making false statements to the FBI at John F. Kennedy Airport on his way to Bangladesh the previous year.
Shifa’s sister Sonali, who is based in Atlanta, tells Rewire that this initial charge and arrest, which the High Court Division of the Supreme Court of Bangladesh later deemed a violation of international laws, was a terrifying process for the entire family. For days after Shifa was taken they had no news of his whereabouts. Fears that he would somehow wind up in Guantanamo, ensnared in the web of the “war on terror,” gnawed at the edges of their minds but the family pushed these aside, telling themselves that because Shifa had done nothing wrong, they had nothing to fear. With the phone ringing off the hook and the television on 24/7, they gleaned what scraps of information they could from CNN news reports.
It transpired that upon his arrest in Bangladesh, Shifa was stripped naked, wrapped in plastic, and flown via Alaska to New York, Sonali says, where he spent over three months at the Metropolitan Detention Center (MDC) in Brooklyn before being transferred to the federal penitentiary in Atlanta, Georgia. Shifa spent more than three years in pretrial solitary confinement before ever being formally charged with a crime, his sister said.
Once Shifa was inside the criminal justice system, Sonali explains, federal authorities quickly dropped the initial charges against him and began to build a case around allegations of material support.
At the heart of the case was Shifa’s renown as an Islamic scholar with a larger-than-life online persona—he had studied classical Arabic and the history of religion as a student in Canada and was a gifted translator, often sharing interpretations of Islamic or political texts on the internet. The Sadequee family says Shifa’s trial was riddled with shortcomings, including the use of previously classified evidence and the selection of jurors who admitted to having anti-Muslim bias—which Human Rights Watch says is a common problem. In addition, the prosecution used Shifa’s ideology as a brush with which to paint him as a fearsome radical, on the verge of carrying out a violent attack on U.S. soil.
Although Shifa, according to Sonali, never engaged in any actions beyond practicing free speech, he was found guilty on four terrorism counts in 2009 and, at the age of 23, sentenced to 17 years in federal prison. He represented himself at the trial, making him one of the first Muslim youth to do so in a national security case, according to his sisters.
Both Sonali and Sharmin Sadequee, who is based in New York, have been mobilizing on his behalf for over a decade. After years of shielding themselves from the backlash of isolation and Islamophobia that invariably accompanies charges of terrorism, the young women have turned their advocacy into an art form.
In an interview with Rewire, Sonali explains that when her brother was arrested, the women in her family developed an organic division of labor that allowed them to form a united front against the horror and uncertainty that had descended on their lives.
“I was already plugged into the social justice community in Atlanta, so I saw my role as tapping into that support network, bringing resources to my family to make sure we all understood the human rights issues involved, ensuring we had the skills to confront the media, which was bombarding us at the time,” she says. Her sister, meanwhile, dealt with the prisons, navigating bureaucratic visitation rules and ensuring Shifa had what he needed on the inside.
“Sharmin and my mother also reached out to the Muslim community, to mosques and other groups,” Sonali continues. “And the rest of the time, my mother was on the prayer rug. I don’t know how many hours she spent kneeling and praying.”
They built a website that is always fresh with the latest news about Shifa’s case and serves as a hub for their activism—they recently announced a letter-writing campaign to mark Ramadan, inviting more than 1,000 followers of a Justice for Shifa Facebook group to send greeting cards to Muslim prisoners. Countless hours are eaten up attending rallies, speaking on panels, or sitting with reporters, patiently unpacking the messy details of Shifa’s case.
The irony is that while the Sadequee sisters make a powerful team, they are constantly called upon to do what they say is the hardest thing of all: relive a time in their lives they would rather forget.
“I don’t like to do these interviews,” Sonali says bluntly. “I don’t enjoy them at all—but I recognize they have to be done. Only by sharing what happened to us, by talking about it, will others learn from it.”
They say they have been trying to create collective responses to state violence resulting from the “war on terror,” and hope to combat the government’s tactics of fear and isolation by building community power and resiliency. But this is easier said than done: Not only must the Sadequees contend with the lingering stigma of Shifa’s trial, but they also, until very recently, had to deal with the trauma of visiting their brother in a prison unit that has been described by former detainees as “Little Gitmo.”
CMUs: “A Religious and Political Quarantine”
Between 2009 and 2015, Shifa was imprisoned in the Communications Management Unit (CMU) at the federal detention center in Terre Haute, Indiana, a segregated portion of the prison comprised almost exclusively of Muslim men that has been the subject of a legal battle since 2010.
This past March, the Center for Constitutional Rights (CCR) urged the Court of Appeals for the District of Columbia to reinstate a lawsuit the group first filed six years ago challenging CMUs, which the Bureau of Prisons (BOP) quietly ushered into existence under the Bush administration—the first in 2006 in Indiana, and the second in 2008 in Marion, Illinois.
Conditions in these units, which house 60 to 70 prisoners combined, are harsh, according to the CCR: Although inmates are not held in isolation, they are banned from having any physical contact with family members during visits, and their calls are restricted to two per week, each for 15 minutes. By contrast, other BOP inmates are allowed 300 minutes worth of calls every month.
CCR claims the CMUs violate prisoners’ procedural due process rights, and argue that placement in these units is both arbitrary and retaliatory, with Muslim prisoners vastly overrepresented.
“Between 2006 and 2014, about 170 individuals filtered through these units and 101 of them—about 60 percent—were Muslims, even though Muslims only constitute 6 percent of the general federal prison population,” CCR Senior Staff Attorney Rachel Meeropol tells Rewire in a phone interview.
CCR reported in 2010 that in Marion, 72 percent of current CMU prisoners were Muslim, a 1,200 percent overrepresentation, while two-thirds of the CMU population in Terra Haute was Muslim, 1,000 percent higher than the national average of Muslim prisoners in federal facilities.
“We are challenging the lack of procedural protections before prisoners are placed in the CMU and also alleging that placement is in retaliation for protected political and religious speech,” Meeropol says, pointing out that inmates in the CMU are seldom given reasons for why they were moved into the units, and are routinely denied opportunities to earn their release into general population.
“CMUs are essentially a religious and political quarantine, the same kind of segregation that has supposedly been outlawed in this country,” she added.
In response to multiple requests for comment about these allegations, Justin Long with the Office of Public Affairs at the Information, Policy and Public Affairs Division for the BOP said in an email to Rewire, “The Bureau of Prisons cannot comment on matters currently in litigation,” and directed Rewire to the Bureau’s web page on CMUs.
In addition to being hard on inmates, Meeropol says CMUs are also “debilitating” for families, especially those with young children who cannot communicate with their fathers through letters, and often cannot understand why they are forced to speak to them through glass, using phones that are monitored by prison staff.
“Several mothers have told me that they’ve stopped bringing their children on visits because it was just too devastating,” Meeropol says.
The Collective Trauma of “Supermax” Prisons and Solitary Confinement
The alternative, some might say, is even worse. All over the country, Muslim prisoners are serving decades-long sentences in solitary confinement, which the United Nations has recognized as a form of torture. Advocates and relatives of terror suspects, or those incarcerated on terrorism charges, have long cried foul over these conditions of confinement, which they say is a form of collective punishment on entire families.
Zurata Duka, whose three sons, Dritan, Shain, and Eljvir were arrested in a manufactured terror plot by the government in 2007, is well aware of the toll of solitary confinement. Her sons have spent dozens of years between them in complete isolation, including long stints at the maximum-security facility in Florence, Colorado.
“My sons are strong—they never let us see them cry, even when their daughters are crying on the other side of the glass,” she says to Rewire. “But once my son Dritan told me he nearly lost his mind in isolation.”
Before his arrest, Zurata tells Rewire, Dritan had been very close with his youngest daughter. Every night he would put her to sleep, stroking her hair and singing lullabies. In those early days after he was taken away, the little girl would lie awake at night, calling out for her father. Unbeknownst to the family, thousands of miles away, Dritan was experiencing something similar.
“He told me, ‘Mom, I don’t know what happened. For three days I just lay there, stroking my pillow, thinking it was [his daughter]. I didn’t know who I was and I don’t know how I came back,’” Zurata recalls him saying.
His daughter was so desperate to see him that one day she penned a note to the president. It read: “Dear Mr. Obama. Today is my birthday. I am five years old. Please, if you can, bring my father back just for one day, so I can hug and kiss him, and then, if you want, you can take him back again.” Zurata says she mailed the letter to the White House. She never heard back.
Almost every family has a similar story. According to Mariam Abu-Ali, conditions of confinement often come up at annual gatherings of affected families, which she organizes in her role as director of the Prisoners and Families Committee at the National Coalition to Protect Civil Freedoms.
“About 90 percent of the attendees are women,” she says in a phone interview with Rewire, “and they bring a lot of pain and anxiety into the room. But I’d say the meetings are cathartic,” she adds. “It’s the place where we build bonds with the only people who know what we’re going through.”
Several women who’ve attended the conference in the past tell Rewire they are powerful spaces, offering families a rare chance to speak openly about their lives without fear of being misunderstood, judged, or pitied. It is also a moment for families, particularly women, to share in the collective nature of their trauma, especially the pain of incarceration.
In the 13 years that her brother has served, Mariam says she has come to the painful realization that prisons don’t just lock up individuals—they are a form of bondage on the entire family.
Because Ahmed Omar is imprisoned 1,600 miles from the family’s home in Virginia, in one of the BOP’s maximum-security facilities in Colorado, they only see him once or twice a year. Visits are limited to three family members at a time, meaning Mariam has not seen Ahmed in two years. He reserves his two monthly phone calls for his parents, so she can only hope to talk to him when she visits them. Even these calls are a source of enormous frustration. As she wrote in a recent op-ed:
My mom has spent every Tuesday and Thursday of the last decade, at home, sitting by the phone, patiently waiting for a call that sometimes did not come. And when the call does come, what can one even discuss in 15 minutes? Do you ask him how he’s doing? How can you even ask him how he’s feeling? Do you discuss his prison conditions? His legal case? How do you break the news to him when his aunt or grandfather has passed away?
“What you have to understand is that my brother’s case wasn’t just one devastating ‘moment’ in our lives—it’s a lifelong struggle,” Mariam tells Rewire. “This is not something you ever get used to, or accept. It’s about learning new ways of coping every single day, like living with a chronic illness.”
Each day brings fresh challenges, and tough decisions. For instance, Mariam used to maintain a website, manage a Facebook page, and post daily updates on a Twitter account all relating to her brother’s case. One day she felt she just couldn’t do it anymore.
“At a point you have to ask yourself—do I work full time and provide for my family or do I advocate full time on behalf of my loved one?” she asks. “This work, it’s emotionally draining, it’s a daily struggle and it doesn’t necessarily get easier with time.”
CORRECTION: An earlier version of this article misidentified the officials whom Shifa Sadequee had been accused of making false statements to. It was FBI officers, not immigration officials.
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—and the practice could become legal in other states as well.
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 isrecognized 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 signedHB 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 toldPolitico 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.
A “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.