Dobbs decision adds hurdles to genetic counseling
Jhe Supreme Court decision in Dobbs v. Jackson Women’s Health Organization which struck down the constitutional right to abortion guaranteed by Roe v. Wade in 1973 is also a huge setback for genetic counseling and people who need it.
In 2013, when anti-abortion activists were still forced to maneuver around Roe v. Wade, North Dakota passed a law prohibiting abortions motivated by the diagnosis of a “genetic abnormality or potential for a genetic abnormality.” With this, and similar laws passed in 13 other states, the anti-abortion movement has cast itself as the champion for people with genetic conditions – despite these states being among the least active in supporting families and children. in need of social services and medical care.
In a 2019 Supreme Court decision, Justice Clarence Thomas hailed these laws as appropriate antidotes to “modern eugenics.” By allowing states to ban all abortions, including so-called eugenic abortions — which Thomas described as abortions that “eliminate children with unwanted characteristics, such as a particular gender or disability” — the Dobbs decision will likely end up make life more difficult for those affected by genetic diseases, their families and the counselors who advise them.
It’s the confluence of two burgeoning currents: a flood of new state-specific restrictions on abortion and a rapid rise in genetic and reproductive technologies that identify who is at risk of having a child with a disease. genetics before or during pregnancy.
Tests known as carrier screening can identify future parents who carry genes that may create health problems for their future children. A simple blood test during the first trimester of pregnancy can be used to examine fetal DNA fragments for changes associated with genetic conditions in the fetus that occur when something goes wrong during conception or pregnancy. developmental process during pregnancy. And anatomical scans at 20 weeks can identify structural abnormalities.
Although many have expressed qualms about the best uses for these technologies, expectant parents have voted for them with their feet. Introduced just over 10 years ago, tests that examine fetal DNA and parental DNA have each reached multi-billion dollar markets. But what is now routine prenatal care may no longer be universally available in a post-Dobbs world.
Instead, there will likely be different pathways to prenatal care, depending on where people live. In some states, people will have access to the full spectrum of medically recommended care: carrier screening, prenatal testing, and anatomical exams at 20 weeks. In vitro fertilization and preimplantation genetic testing will also remain legal in these states. In other states, restrictions on abortion can significantly limit access to this care, or even prohibit all or part of it.
Whether people in states that restrict abortion can find ways around those restrictions will depend on their resources. Those who can pay for it may be able to travel to abortion-friendly states to access this care. Those who cannot pay will not have access. Thus, the nature of prenatal care offered to individuals will depend on two factors: where they live and their resources.
A series of interviews with genetic counselors in abortion-unfriendly states conducted by one of us (LH) and colleagues at Sarah Lawrence College before the Dobbs decision shows how abortion restrictions can modify prenatal care. In states like Ohio, without a total ban, genetic counselors have felt compelled to complete genetic testing and anatomical scans sooner than recommended to ensure their patients have time for an abortion if an abnormality was discovered, which could result in missing or misleading information. Patients may not be willing to wait for confirmatory testing, even though they may end a healthy pregnancy.
In states where abortion is currently or may be illegal, genetic counselors do not know what to say about abortion or what to put in the medical record regarding the history and results of the abortion. pregnancy. This raises legal and ethical questions about how to balance professional standards of documentation with potential legal liability for provider and patient.
In Texas, for example, genetic counselors and patients have worked in the equivalent of post-Roe conditions since September 2021, when a law went into effect banning abortion for about two weeks after a missed period. The Texas law uses a unique, vigilante-style enforcement mechanism that other states have adopted that allows people to sue anyone “aiding or abetting” an illegal abortion for $10,000. This affects medical care providers, including genetic counselors.
In interviews, prenatal genetic counselors recounted how communication itself was attacked. As one genetic counselor in Texas put it, “The language of complicity . . . involves genetic counseling. We’re not going to counsel patients on an option that’s not legally available.
Following the Dobbs decision, other overt restrictions on counseling are likely to emerge. A recent proposal by the South Carolina Legislature would make it a crime to help someone arrange for abortion care and prohibits anyone from providing information “by telephone, Internet, or any other mode of communication…knowing that information will be used or reasonably likely. be used, for an abortion. If passed, the law would effectively criminalize the practice of prenatal genetic counseling.
Preimplantation genetic testing may also be affected if states pass personality laws (as has been proposed in at least eight states), which limit the number of embryos created by IVF or prohibit their destruction. Such efforts would make IVF and preimplantation genetic testing more difficult, more expensive, and even less accessible to people with limited resources. Any idea that access to these technologies is based on a constitutional right to abortion no longer applies after Dobbs.
Likewise, in the post-Dobbs era, nothing prevents states from restricting certain types of prenatal testing or preimplantation genetic testing to protect life and promote so-called “anti-eugenics” policies. However, the fact that these are popular tests marketed by deep-pocketed industries makes this unlikely. Far more likely is restricting funding for prenatal testing, as former Sen. Rick Santorum (R-Penn.) once proposed, which would disproportionately affect vulnerable populations.
While some pregnant women will be able to avoid abortion bans by getting pills in the mail, which will allow them to safely and effectively terminate a pregnancy up to the 10th week of gestation, medical abortion is rarely a option for people who wish to terminate a pregnancy because their fetus has a genetic disease that compromises its health. Even couples who know in advance that they are at risk of having a child with a disease such as sickle cell disease or Duchenne muscular dystrophy cannot know if their fetus is a carrier of the disease at 10 weeks gestation. For the vast majority of conditions discovered during pregnancy, diagnosis is not possible until the second trimester, or even later. Abortions at this stage cannot be accomplished with pills and are more expensive and more difficult to arrange than earlier procedures.
Prenatal genetic testing has historically been associated with Down syndrome, for which testing has been available for decades, and can currently be performed as early as 10 weeks. Not all parents choose to be tested, and not everyone who receives a prenatal diagnosis of Down syndrome will terminate the pregnancy; in fact, the number of people with Down syndrome has never been higher.
Certainly, Down syndrome is not a good substitute for other forms of genetic diseases. People with Down syndrome and their families have sent a clear message that their quality of life is good, while people with other genetic conditions die at a young age and often have a limited or poor quality of life.
Still, the impact of prenatal testing on Down syndrome demographics is instructive. In the best study to date of abortion rates following a prenatal diagnosis of Down syndrome, 67% of intended parents terminated the pregnancy. But the researchers noted that because of the differences between the different populations studied, “a summary termination rate may not be applicable to the entire US population.” In other words, prenatal screening for Down syndrome did not reduce the number of people with Down syndrome in all areas – it reduced it in some communities and not in others. Giving birth to a child with Down syndrome was once an example of something that could happen to anyone. Today, it varies by culture and region, with higher numbers among Hispanics and extremely low numbers on Manhattan’s largely white and affluent Upper East Side.
Families struggling with genetic diseases not only need reproductive rights: they also need expensive medical care, social support, research programs, advocacy and social awareness of the challenges. their children face. They struggle to get such support today, even when they can appeal to a community of interest. They will find it all the more difficult as a large part of the population comes to consider genetic diseases as something preventable, as is increasingly the case. Will those who can access genetic medicine remain attentive to the needs of those left behind? If support for national foundations and research programs declines, it will hit hardest states where local resources for families are scarce — the very states most likely to restrict abortion.
In a post-Roe world, there will be nothing random about the impact of genetic bad luck, and genetic disease demographics will increasingly be defined by regional abortion restrictions and status. socioeconomic. Culture war hostilities will become even more baggage for families whose children have genetic conditions, increasing the burden of stigma and reducing their sources of support. The Dobbs Opinion ended up acknowledging a legitimate state interest in preventing “discrimination based on race, sex, or disability”—a not-so-veiled reference to eugenic abortions. But dividing the country into areas with and without access to reproductive genetics will do the exact opposite and disproportionately harm people with genetic diseases and the people who love them.
Sonia M. Suter is Professor of Law and Founding Director of the Health Law Initiative at George Washington University in Washington, D.C. Laura Hercher is Director of Human Genetics Research at Sarah Lawrence College in Bronxville, NY