In January, two legislators in Virginia’s House of Delegates introduced a bill that should have been uncontroversial. The bulk of HB 612 created new rules for genetic counselors practicing in the state, who had been unregulated and unlicensed. The roughly 95 genetic counselors already working in the state, screening pregnant women and adults for serious inheritable conditions, favored the law, which they saw as an extra layer of patient protection. The bill was so innocuous that by the time it passed in the House in late February, no one seemed to have noticed that it contained a conscience clause so sweeping that could allow counselors to refuse to provide fetal test results for conditions like Down Syndrome or Tay-Sachs Disease—the information patients came to them for in the first place—if they believed it could cause a woman to terminate her pregnancy.
Originally, the bill had only created a loophole for genetic counselors who want to refrain from offering information about abortion. These types of conscience clauses are typical in reproductive medicine—think of pharmacists refusing to provide birth control. They are, however, a significant concession for genetics counselors, since one of their primary tasks is to screen pregnant women for fetal abnormalities. Later, a House subcommittee broadened the language to protect genetic counselors from legal retaliation if they refused to participate in counseling that violated their religious beliefs. By the time the bill hit the Senate, a coalition of left-leaning organizations led by the ACLU of Virginia, alarmed by the conscience clause’s wide scope, were ready to fight. In their view, the language not only allowed genetic counselors to refuse to work with gay or unwed couples; it protected them if they withheld serious test results from pregnant women. Advocates from the ACLU and other abortion rights groups urged the Senate to weaken the language, but its sponsor—Janet Howell, a pro-choice Democrat—rebuffed them. In late March, Virginia’s Democratic governor, Terry McAuliffe, signed the bill into law with the conscience clause intact, to the indignation of his liberal allies.
Genetic counseling is a relatively young profession with only a few thousand practitioners and little institutional clout. Virginia is only the fifteenth state to license them. They were peripheral to the fracas there, which pitted the conservative Family Foundation against the ACLU and its allies. (Neither group cared whether the counselors should be licensed: Debate revolved around the religious-freedom loophole, which mirrored efforts in other states to allow organizations to refuse to serve gay and lesbian customers.) But the passage of the Virginia law raises the possibility that conscience clauses may become par for the course as genetic counselors seek legitimacy in states. Genetic counselors have struggled for years to dislodge the notion that they advocate for abortion with their clients, but part of their job is to counsel pregnant women about all of their options. In the case of severe fetal abnormalities, that invariably includes a discussion of termination. Joel Frader, a professor of medical humanities at Northwestern University, believes that unless genetic counselors restrict their practice to screening adults for cancer or Huntington’s Disease, abortion needs to be part of their professional lexicon. “If you’re in the business of neonatal genetic counseling and you’re uncomfortable talking about abortion, you don’t need a conscience clause,” he says. “You need to think about whether you should find a new profession.”
In 2012, presidential candidate Rick Santorum declared that 90 percent of fetuses with Down’s Syndrome are aborted. There is no comprehensive data on how many pregnant women who are diagnosed with fetal abnormalities choose abortion, but claims like Santorum’s have become a rallying cry on the right. Anti-choice advocates contend that abortions for fetal anomalies amount to eugenics. Early in 2013, one of these groups, Americans United for Life, released model legislation that would criminalize abortion in cases of sex selection and genetic abnormality. The laws were introduced in handful of states—including North Dakota, Indiana, and Missouri—although only North Dakota's passed. Two of the states that have licensed genetic counselors—Oklahoma and Nebraska—have conscience clauses that allow them to refuse to provide information about abortion. In Rhode Island, a licensure bill died in committee after the ACLU insisted that its conscience clause be removed.
The sometimes-unsavory history of genetic counseling doesn’t make combating these criticisms any easier. Genetic counseling emerged in the late 1940s and early 1950s, driven by scientists intent on improving the human gene pool. Although some early counselors had qualms about their colleagues’ enthusiasm for discouraging procreation among couples who might produce children with genetic defects, others were all too comfortable with the idea of playing God. The psychiatrist Franz Kallmann, one of the founders of the American Society of Human Genetics, once observed that “persons requesting genetic advice cannot always be presumed to be capable of making a realistic decision as to the choice of a mate, or the advisability of parenthood, without support in the form of directive guidance and encouragement.” The role of the genetic counselor, in his view, was to shape humanity’s genetic future by promoting ideal reproductive partnerships and discouraging those unfortunates in genetically imperfect unions from producing offspring.
This eugenic view persisted into the 1970s, when genetic counselors, shocked by Congressional hearings on the Tuskegee syphilis study and the involuntary sterilization of thousands of poor and minority women over the previous decade, began to reconsider their ethical approach. New codes of professional ethics emphasized patient autonomy and reproductive choice. In 1979, The National Society of Genetic Counselors was founded; from the start, it supported women’s rights to end—or not to end—a pregnancy. Their statement on reproductive freedom also emphasizes women’s right to use information from genetic testing to prepare for the needs of children with genetic problems. Many genetic counselors began to resist the notion that they were abortion pushers. “The focus is above all on the client and her situation, not on what an individual counselor believes is right or wrong,” says Alexandra Minna Stern, a medical historian at the University of Michigan.
The specter of its eugenic past continues to haunt the profession, feeding the misperception that abortion is its customary prescription for birth defects or genetic disabilities. Susan Hassed, the director of the University of Oklahoma’s genetic counseling program, promoted the state’s licensure law, which passed in 2005. She says that abortion was frequently mentioned during the legislature’s debates; the law ultimately included a conscience clause. “It was a little aggravating because our job is not selling termination,” Hassed says. “People who see genetic counselors during pregnancy are not looking for an excuse to terminate. They’re wanted pregnancies.”
In the states where conscience clauses are already ensconced in their licensing statutes, genetic counselors are sanguine about the laws’ effects. A conscience clause doesn’t seem too much to ask in exchange for gaining a regulatory framework. “I’m a pragmatist,” Hassed says. “Of course I’d like it if the law were simpler. But licensure is important because it protects the public from people who could provide incorrect information. I don’t think people would go into genetic counseling wanting to do harm.” Genetic counselors, mostly younger women who support reproductive rights, are not inclined to take advantage of a conscience clause anyway, Stern says. She warns, though, that could change. “You’ve seen the rise of pregnancy consultation services with a strong pro-life bent,” she says. “Conscience clauses would open it up to counselors who might never refer anyone for an abortion.”
Even if the conscience clauses don’t pose an immediate problem, genetic counselors may find their work stymied by another strain of anti-choice restriction: bans on abortion after 20 weeks. Disorders caused by genetic abnormalities often can’t be detected until the second trimester of pregnancy. As a result, many of the pregnant women who are diagnosed with fetal abnormalities and choose to terminate their pregnancy don’t seek an abortion until after the 20-week cutoff. Seven of states that now ban abortion after that include no exception for fetal anomalies. Georgia, Louisiana, Texas, and Utah allow exemptions only for lethal anomalies, effectively prohibiting abortion after 20 weeks for diagnoses like Down Syndrome. These restrictions force genetic counselors to send patients seeking abortion after 20 weeks to clinics outside the state, a stressful and expensive process.
If anti-choice legislation continues to impinge on their practice, genetic counselors may have no choice but to go on the offensive to avoid seeing these laws undermine their code of ethics. “A broad range of reproductive health care options aren’t negotiable in this field,” Stern says. “They need to be legal and available.”