Under the new abortion law, genetic test results may be too late

Many have decided to stop their pregnancy after this diagnosis, the genetic counselor told Anne and her husband. But the counselor had worse news. Two days later, the family lost that option in their hometown of Texas. The law,, came into force on September 1, 2021, and is the person who assists those who have an abortion after six weeks ofin Texas. Anyone can sue. Abortion — and the state offers a$ 10,000 bountyif the plaintiff wins. The genetic counselor told Anne that for this reason she could no longer discuss her retirement with her.

"When I thought,'It doesn't matter. We haven't given up on this pregnancy,'" Anne said. Potential legal impact on her healthcare provider, her husband, or herself under the unclear legal framework of Texas. She considered herself a professional life, but she had to confirm her diagnosis with amniocentesis and ultrasonography.

But after reading about her condition, she realized how devastating it could be. If a child survives a statistically unlikely birth, the child may be hospitalized frequently and require daily hormone injections, which cost $ 60,000 a year. Ann and her husband began to worry about how having this child would affect the other three children.

Most abortions occur in 13 weeks or earlierPeople seeking abortion after that often have barriers to access to care and detection of complications. I have listed it. However, Texas law prohibits virtually any abortion in the state, as many women do not even know they are pregnant in six weeks. Prenatal testing cannot diagnose a genetic condition 11 weeks in advance.

A situation like Anne will soon occurNationwideThe U.S. Supreme Court on June 24 will ban abortion after 15 weeks in Mississippi. I upheld the law.overturned the 1973 Roe v. Wade decision, which guarantees the right to abortion. According to the Guttmacher Institute, a research institute that supports the right to abortion, at least half of thestates are likely to ban abortion.

Prior to the court's ruling, only10 stateswith abortion restrictions were exempt from prenatal or fatal conditions at birth. Nothing allows an exemption for a serious but non-fatal condition. Without such an exemption, people who cannot afford to raise children with disabilities or go to out-of-state clinics can be placed in difficult places.

For families who have just learned a child, such legal issues are already another trauma to traumatic decisions if the childbirth cannot survive or become debilitating. To add.

Houston's prenatal genetic counselor, Lauren Westerfield, said Texas law made it impossible for her to do her job altogether. For that reason, many counselors choose not to practice in Texas or other states where abortion is currently or will soon be illegal due to the Trigger Act initiated by the Supreme Court's ruling. I'm expecting that.

When the patient asks about the end, "I tell them,'legally, in Texas, you don't have that option,'" she said. "There is no word to describe the facial expressions that appear on their faces when they hear it."

Many patients have no choice but to carry their pregnancy to maturity. Westerfield estimated that at least 75% of patients who would have finished their pregnancy have been prevented since the passage of state law.

Little is known about the consequences of people who cannot have an abortion due to a genetic abnormality. However, astudy that tracked 1,000 womenwho left the abortion clinic because they exceeded the limits of abortion was far more likely to fall into poverty than women who had an abortion, overall. I found that my health was poor.

According to Laura Hercher, a genetics expert and ethicist at Sara Lawrence University, restrictive abortion methods provide better prenatal care, especially with technological advances. Therefore, we are worried that the genetic disorder will eventually mean that it will occur almost exclusively among the poor families. Wealthy people can travel to other states for abortion — or undergo in vitro procedures to screen for embryos with genetic abnormalities.

"Ultimately, some of the population will create a situation where" this can't happen to me, "she said — and can't afford that privilege. Everyone else will get stuck without choice.

Dr. Dr. Brian Scotko, a clinical geneticist at Massachusetts General Hospital and an advocate for people with Down Syndrome, said that a lack of education and awareness about genetic disorders can lead to these disorders and whether pregnancy continues. For parents to choose. He said prenatal counselors need to provide pregnant parents with accurate and up-to-date information about the reality of these conditions so that they can make informed decisions.

As prenatal testing becomes more common, so is the selective termination of pregnancy with a genetic condition. A review of published studies suggests that67%of pregnancies diagnosed with Down syndrome end with an abortion.

However, among anti-abortionists, ending a pregnancy after such a diagnosis is considered a tort against a weak party. Texas Light to Life President John Siegocalled such a situation "tragic", but "the only solution is to kill the child. I need a better answer than "." }

Seago is known as the Prenatal Anti-Discrimination Act, which requires genetic counselors to inform patients about prenatal palliative care services and support groups that support pregnancyHe said he would support the Texas bill. semester. Now, he said, the "only voice" that pregnant people hear in medical conversations is in favor of abortion.

For Anne of Texas, there was no easy answer. A week after the initial test results, amniocentesis and ultrasonography confirmed Juliet's anatomy and found the worst. Juliet suffered from severe heart disease, muscle problems and other complications.

Ann joined a turner syndrome support group and began reading about people living with disabilities. Many of the people she learned have died of heart disease in their 20s and 30s. She also watched a video of a girl with Turner Syndrome receiving daily hormone injections. The child was screaming in pain.

It was when Anne decided to end her pregnancy for fear of the pain Juliet would experience every day. "This decision comes from love," she said. "It's about getting rid of the pain from them by experiencing it for yourself."

She made an appointment with a Colorado clinic in late September. Since she was 19 weeks pregnant, the procedure was complicated and expensive, and she had to stay in Colorado for a week.

She knows she was fortunate to have travel options that many couldn't in her situation. "I was really angry because I felt this should be done by your doctor and your hospital," she said.

Immediately after the result of the amniocentesis, she began to experience severe cramps. But she does not face her choice of dropping her as her patient or being sued under Texas law for betting her abortion on the obstetrician and gynecologist she sees. I was worried that I didn't talk.

Seago stated that the law applies only to abortions performed within Texas. It is not a crime to help someone have an abortion outside the state.

Still, Hercher and others are worried that this kind of fear and uncertainty may hurt pregnant people. Laws in Texas and most other states provide exemptions to protect the health of mothers, but it is unclear how this will be interpreted in each state.

Ann had an abortion on September 28 — a month after her first diagnosis turned her family's joy into a nightmare. Before cremation of her Juliet, she embraced her daughter.

In recent months she has joined a support group for mothers who have finished her pregnancy for medical reasons. In addition to providing a loving and understanding community, they are the only people who can fully understand the situation in her family.

"It never feels like a decision," she said. "Diagnosis is a decision made for you.

KHN(Kaiser Health News) is a national news room that produces detailed journalism on health issues. KHN is one of the three main operational programs of the Kaiser Family Foundation, along with policy analysis and polling,KFF. KFF is a donated non-profit organization that provides the public with information on health issues.

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