Ethics of Technology: Prenatal Testing, Abortion & Disability Rights

Amie Newman

William Saletan writes on Slate today about pre-birth defects, abortion and the ethics of technology. A new law may bridge all three.

Here’s a bit of across the aisle action during this contentious campaign season. William Saletan writes today on Slate ("Pre-Birth Defects – Pre-natal tests, genetics, and abortion") about the increasing availability of prenatal testing and its impact on women’s reproductive health decisions, particularly abortion.

The gist of Saletan’s article is the concern that as more and more accurate assisted technology in the field of reproductive health is developed, couples are faced with more difficult decision making – decision making that brings more responsibililty. As well, both reproductive health and rights advocates and the anti-choice movement are faced with new information that significantly impacts the discussion on both sides. 

As reproductive health technology becomes more able to predict particular health outcomes in babies, pinpointing conditions in utero like Down Syndrome, spina bifida, and anencephaly, and ultrasounds are able to provide a glimpse into conditions as well, pregnant women are faced with an abundance of information that, if not presented with clarity and an understanding of what it all means, may not be helpful.  

Inherent in these new developments is still the time-told issue of a woman’s personal decision making ability in this society, free from government interference. And reproductive health and rights advocates certainly support a pregnant woman’s right to make the decision to terminate her pregnancy based on her own reasoning – not society’s and not the government’s. 

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However, that argument does little to address the underlying issue – the nexus of both disability rights and reproductive rights in this discussion. There has already been a tremendous step forward in this regard – and one about which very few have taken note. 

Governor Palin has used "special needs children" as a cornerstore of her political campaign, claiming that families with special needs children will have an advocate in the White House should she get elected. But it’s been more than a little difficult to ascertain what exactly she means by this in concrete policy terms. The reality for so many families in this country is that they simply do not have access to the services – health, support and otherwise – that Governor Palin has been lucky enough to have. To advocate rhetorically for a "culture of life" without acknowledging that most American families simply do not have the means to care for a special needs child without government assistance is more than useless – it’s harmful. Pregnant women with or without partners faced with making a decision about whether or not to continue with a pregnancy when the fetus may be afflicted with a condition that will require extensive health care and support services throughout his or her life, must take into consideration their economic and familial reality in this situation. 

Which is why a barely reported on Act that was signed into law on October 8th, 2008 has so much significance in this discussion. The Prenatally and Postnatally Diagnosed Conditions Awareness Act, authored by (of all people) Senator Sam Bronwback and originally co-sponsored by Senator Edward Kennedy (with Senator McCain signed on as well), provides pre and post pregnancy support to pregnant women and new mothers whose fetus or newborn is diagnosed with a disability. 

The Act mandates the creation of a telephone hotline to support pregnant women and mothers, a registry service for couples looking to adopt newborns with Down Syndrome, the expansion and development of local, regional and national support peer networks for families of children with disabilities and education and awareness programs for health care providers who speak to parents about prenatal genetics testing. Of course, we really need affordable care services once the children are born, we need to make it easier for low and middle income families to find affordable and accessible child care options, we need health care expansion programs. But this act is a step in the right direction. 

And, true to the collaborative nature of the act, it addresses the connection between reproductive justice and disability rights:

The disability community has been concerned that pregnant women receive negatively biased information about what it means to have a child with a disability, shaped by negative societal attitudes toward disability. A lack of balanced information may contribute to the high rate of abortion upon a prenatal diagnosis of Down syndrome. 

By providing more comprehensive information and resources, the Prenatally and Postnatally Diagnosed Conditions Awareness Act may effectively expand women’s reproductive options. The information and support provided will allow a pregnant woman and her family to determine an outcome that fits within their personal, cultural, religious, and social context. Specifically, more comprehensive material about disability and a physician or genetic counselor will better prepindependent decision that is right for them.

Reproductive health technology brings up new ethical considerations for advocates from the reproductive health community, disability rights community and even anti-choice community but it’s an area where we may find some common ground. 

News Abortion

Parental Notification Law Struck Down in Alaska

Michelle D. Anderson

"The reality is that some young women face desperate circumstances and potentially violent consequences if they are forced to bring their parents into their reproductive health decisions," said Janet Crepps, senior counsel at the Center for Reproductive Rights. "This law would have deprived these vulnerable women of their constitutional rights and put them at risk of serious harm."

The Alaska Supreme Court has struck down a state law requiring physicians to give the parents, guardians, or custodians of teenage minors a two-day notice before performing an abortion.

The court ruled that the parental notification law, which applies to teenagers younger than 18, violated the Alaska Constitution’s equal protection guarantee and could not be enforced.

The ruling stems from an Anchorage Superior Court decision that involved the case of Planned Parenthood of the Great Northwest and the Hawaiian Islands and physicians Dr. Jan Whitefield and Dr. Susan Lemagie against the State of Alaska and the notification law’s sponsors.

In the lower court ruling, a judge denied Planned Parenthood’s requested preliminary injunction against the law as a whole and went on to uphold the majority of the notification law.

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Planned Parenthood and the physicians had appealed that superior court ruling and asked for a reversal on both equal protection and privacy grounds.

Meanwhile, the State of Alaska and the notification law’s sponsors appealed the court’s decision to strike some of its provisions and the court’s ruling.

The notification law came about after an initiative approved by voters in August 2010. The law applied to “unemancipated, unmarried minors” younger than 18 seeking to terminate a pregnancy and only makes exceptions in documented cases of abuse and medical emergencies, such as one in which the pregnant person’s life is in danger.

Justice Daniel E. Winfree wrote in the majority opinion that the anti-choice law created “considerable tension between a minor’s fundamental privacy right to reproductive choice and how the State may advance its compelling interests.”

He said the law was discriminatory and that it could unjustifiably burden “the fundamental privacy rights only of minors seeking pregnancy termination, rather than [equally] to all pregnant minors.”

Chief Justice Craig Stowers dissented, arguing that the majority’s opinion “unjustifiably” departed from the Alaska Supreme Court’s prior approval of parental notification.

Stowers said the opinion “misapplies our equal protection case law by comparing two groups that are not similarly situated, and fails to consider how other states have handled similar questions related to parental notification laws.”

Center for Reproductive Rights (CRR) officials praised the court’s ruling, saying that Alaska’s vulnerable teenagers will now be relieved of additional burdensome hurdles in accessing abortion care. Attorneys from the American Civil Liberties Union, CRR, and Planned Parenthood represented plaintiffs in the case.

Janet Crepps, senior counsel at CRR, said in a statement that the “decision provides important protection to the safety and well-being of young women who need to end a pregnancy.”

“The reality is that some young women face desperate circumstances and potentially violent consequences if they are forced to bring their parents into their reproductive health decisions. This law would have deprived these vulnerable women of their constitutional rights and put them at risk of serious harm,” Crepps said.

CRR officials also noted that most young women seeking abortion care involve a parent, but some do not because they live an abusive or unsafe home.

The American Medical Association, the American College of Obstetricians and Gynecologists, and the Society for Adolescent Medicine have said minors’ access to confidential reproductive health services should be protected, according to CRR.

Analysis Law and Policy

Indiana Court of Appeals Tosses Patel Feticide Conviction, Still Defers to Junk Science

Jessica Mason Pieklo

The Indiana Court of Appeals ruled patients cannot be prosecuted for self-inducing an abortion under the feticide statute, but left open the possibility other criminal charges could apply.

The Indiana Court of Appeals on Friday vacated the feticide conviction of Purvi Patel, an Indiana woman who faced 20 years in prison for what state attorneys argued was a self-induced abortion. The good news is the court decided Patel and others in the state could not be charged and convicted for feticide after experiencing failed pregnancies. The bad news is that the court still deferred to junk science at trial that claimed Patel’s fetus was on the cusp of viability and had taken a breath outside the womb, and largely upheld Patel’s conviction of felony neglect of a dependent. This leaves the door open for similar prosecutions in the state in the future.

As Rewire previously reported, “In July 2013 … Purvi Patel sought treatment at a hospital emergency room for heavy vaginal bleeding, telling doctors she’d had a miscarriage. That set off a chain of events, which eventually led to a jury convicting Patel of one count of feticide and one count of felony neglect of a dependent in February 2015.”

To charge Patel with feticide under Indiana’s law, the state at trial was required to prove she “knowingly or intentionally” terminated her pregnancy “with an intention other than to produce a live birth or to remove a dead fetus.”

According to the Indiana Court of Appeals, attorneys for the State of Indiana failed to show the legislature had originally passed the feticide statute with the intention of criminally charging patients like Patel for terminating their own pregnancies. Patel’s case, the court said, marked an “abrupt departure” from the normal course of prosecutions under the statute.

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“This is the first case that we are aware of in which the State has used the feticide statute to prosecute a pregnant woman (or anyone else) for performing an illegal abortion, as that term is commonly understood,” the decision reads. “[T]he wording of the statute as a whole indicate[s] that the legislature intended for any criminal liability to be imposed on medical personnel, not on women who perform their own abortions,” the court continued.

“[W]e conclude that the legislature never intended the feticide statute to apply to pregnant women in the first place,” it said.

This is an important holding, because Patel was not actually the first woman Indiana prosecutors tried to jail for a failed pregnancy outcome. In 2011, state prosecutors brought an attempted feticide charge against Bei Bei Shuai, a pregnant Chinese woman suffering from depression who tried to commit suicide. She survived, but the fetus did not.

Shuai was held in prison for a year until a plea agreement was reached in her case.

The Indiana Court of Appeals did not throw out Patel’s conviction entirely, though. Instead, it vacated Patel’s second charge of Class A felony conviction of neglect of a dependent, ruling Patel should have been charged and convicted of a lower Class D felony. The court remanded the case back to the trial court with instructions to enter judgment against Patel for conviction of a Class D felony neglect of a dependent, and to re-sentence Patel accordingly to that drop in classification.

A Class D felony conviction in Indiana carries with it a sentence of six months to three years.

To support Patel’s second charge of felony neglect at trial, prosecutors needed to show that Patel took abortifacients; that she delivered a viable fetus; that said viable fetus was, in fact, born alive; and that Patel abandoned the fetus. According to the Indiana Court of Appeals, the state got close, but not all the way, to meeting this burden.

According to the Indiana Court of Appeals, the state had presented enough evidence to establish “that the baby took at least one breath and that its heart was beating after delivery and continued to beat until all of its blood had drained out of its body.”

Therefore, the Court of Appeals concluded, it was reasonable for the jury to infer that Patel knowingly neglected the fetus after delivery by failing to provide medical care after its birth. The remaining question, according to the court, was what degree of a felony Patel should have been charged with and convicted of.

That is where the State of Indiana fell short on its neglect of a dependent conviction, the court said. Attorneys had failed to sufficiently show that any medical care Patel could have provided would have resulted in the fetus surviving after birth. Without that evidence, the Indiana Court of Appeals concluded, state attorneys could not support a Class A conviction. The evidence they presented, though, could support a Class D felony conviction, the court said.

In other words, the Indiana Court of Appeals told prosecutors in the state, make sure your medical experts offer more specific testimony next time you bring a charge like the one at issue in Patel’s case.

The decision is a mixed win for reproductive rights and justice advocates. The ruling from the court that the feticide statute cannot be used to prosecute patients for terminating their own pregnancy is an important victory, especially in a state that has sought not just to curb access to abortion, but to eradicate family planning and reproductive health services almost entirely. Friday’s decision made it clear to prosecutors that they cannot rely on the state’s feticide statute to punish patients who turn to desperate measures to end their pregnancies. This is a critical pushback against the full-scale erosion of reproductive rights and autonomy in the state.

But the fact remains that at both trial and appeal, the court and jury largely accepted the conclusions of the state’s medical experts that Patel delivered a live baby that, at least for a moment, was capable of survival outside the womb. And that is troubling. The state’s experts offered these conclusions, despite existing contradictions on key points of evidence such as the gestational age of the fetus—and thus if it was viable—and whether or not the fetus displayed evidence of life when it was born.

Patel’s attorneys tried, unsuccessfully, to rebut those conclusions. For example, the state’s medical expert used the “lung float test,” also known as the hydrostatic test, to conclude Patel’s fetus had taken a breath outside the womb. The test, developed in the 17th century, posits that if a fetus’ lungs are removed and placed in a container of liquid and the lungs float, it means the fetus drew at least one breath of air before dying. If the lungs sink, the theory holds, the fetus did not take a breath.

Not surprisingly, medical forensics has advanced since the 17th century, and medical researchers widely question the hydrostatic test’s reliability. Yet this is the only medical evidence the state presented of live birth.

Ultimately, the fact that the jury decided to accept the conclusions of the state’s experts over Patel’s is itself not shocking. Weighing the evidence and coming to a conclusion of guilt or innocence based on that evidence is what juries do. But it does suggest that when women of color are dragged before a court for a failed pregnancy, they will rarely, if ever, get the benefit of the doubt.

The jurors could have just as easily believed the evidence put forward by Patel’s attorneys that gestational age, and thus viability, was in doubt, but they didn’t. The jurors could have just as easily concluded the state’s medical testimony that the fetus took “at least one breath” was not sufficient to support convicting Patel of a felony and sending her to prison for 20 years. But they didn’t.

Why was the State of Indiana so intent on criminally prosecuting Patel, despite the many glaring weaknesses in the case against her? Why were the jurors so willing to take the State of Indiana’s word over Patel’s when presented with those weaknesses? And why did it take them less than five hours to convict her?

Patel was ordered in March to serve 20 years in prison for her conviction. Friday’s decision upends that; Patel now faces a sentence of six months to three years. She’s been in jail serving her 20 year sentence since February 2015 while her appeal moved forward. If there’s real justice in this case, Patel will be released immediately.