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. 

Analysis Politics

Timeline: Donald Trump’s Shifting Position on Abortion Rights

Ally Boguhn

Trump’s murky position on abortion has caused an uproar this election season as conservatives grapple with a Republican nominee whose stance on the issue has varied over time. Join Rewire for a look back at the business mogul's changing views on abortion.

For much of the 2016 election cycle, Donald Trump’s seemingly ever-changing position on reproductive health care and abortion rights has continued to draw scrutiny.

Trump was “totally pro-choice” in 1999, but “pro-life” by 2011. He wanted to shut down the government to defund Planned Parenthood in August 2015, but claimed “you can’t go around and say that” about such measures two months later. He thinks Planned Parenthood does “very good work” but wants to see it lose all of its funding as long as it offers abortion care. And, perhaps most notoriously, in late March of this year Trump took multiple stances over the course of just a few hours on whether those who have abortions should be punished if it became illegal.

With the hesitancy of anti-choice groups to fully embrace Trump—and with pro-choice organizations like Planned Parenthood, NARAL, and EMILY’s List all backing his opponent, Democratic nominee Hillary Clinton—it is likely his stance on abortion will remain a key election issue moving into November.

Join Rewire for a look back at the business mogul’s changing views on abortion.

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News Human Rights

What’s Driving Women’s Skyrocketing Incarceration Rates?

Michelle D. Anderson

Eighty-two percent of the women in jails nationwide find themselves there for nonviolent offenses, including property, drug, and public order offenses.

Local court and law enforcement systems in small counties throughout the United States are increasingly using jails to warehouse underserved Black and Latina women.

The Vera Institute of Justice, a national policy and research organization, and the John D. and Catherine T. MacArthur Foundation’s Safety and Justice Challenge initiative, released a study last week showing that the number of women in jails based in communities with 250,000 residents or fewer in 2014 had grown 31-fold since 1970, when most county jails lacked a single woman resident.

By comparison, the number of women in jails nationwide had jumped 14-fold since 1970. Historically, jails were designed to hold people not yet convicted of a crime or people serving terms of one year or less, but they are increasingly housing poor women who can’t afford bail.

Eighty-two percent of the women in jails nationwide find themselves there for nonviolent offenses, including property, drug, and public order offenses.

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Overlooked: Women and Jails in an Era of Reform,” calls attention to jail incarceration rates for women in small counties, where rates increased from 79 per 100,000 women to 140 per 100,000 women, compared to large counties, where rates dropped from 76 to 71 per 100,000 women.

The near 50-page report further highlights that families of color, who are already disproportionately affected by economic injustice, poor access to health care, and lack of access to affordable housing, were most negatively affected by the epidemic.

An overwhelming percentage of women in jail, the study showed, were more likely to be survivors of violence and trauma, and have alarming rates of mental illness and substance use problems.

“Overlooked” concluded that jails should be used a last resort to manage women deemed dangerous to others or considered a flight risk.

Elizabeth Swavola, a co-author of “Overlooked” and a senior program associate at the Vera Institute, told Rewire that smaller regions tend to lack resources to address underlying societal factors that often lead women into the jail system.

County officials often draft budgets mainly dedicated to running local jails and law enforcement and can’t or don’t allocate funds for behavioral, employment, and educational programs that could strengthen underserved women and their families.

“Smaller counties become dependent on the jail to deal with the issues,” Swavola said, adding that current trends among women deserves far more inquiry than it has received.

Fred Patrick, director of the Center on Sentencing and Corrections at the Vera Institute, said in “Overlooked” that the study underscored the need for more data that could contribute to “evidence-based analysis and policymaking.”

“Overlooked” relies on several studies and reports, including a previous Vera Institute study on jail misuse, FBI statistics, and Rewire’s investigation on incarcerated women, which examined addiction, parental rights, and reproductive issues.

“Overlooked” authors highlight the “unique” challenges and disadvantages women face in jails.

Women-specific issues include strained access to menstrual hygiene products, abortion care, and contraceptive care, postpartum separation, and shackling, which can harm the pregnant person and fetus by applying “dangerous levels of pressure, and restriction of circulation and fetal movement.”

And while women are more likely to fare better in pre-trail proceedings and receive low bail amounts, the study authors said they are more likely to leave the jail system in worse condition because they are more economically disadvantaged.

The report noted that 60 percent of women housed in jails lacked full-time employment prior to their arrest compared to 40 percent of men. Nearly half of all single Black and Latina women have zero or negative net wealth, “Overlooked” authors said.

This means that costs associated with their arrest and release—such as nonrefundable fees charged by bail bond companies and electronic monitoring fees incurred by women released on pretrial supervision—coupled with cash bail, can devastate women and their families, trapping them in jail or even leading them back to correctional institutions following their release.

For example, the authors noted that 36 percent of women detained in a pretrial unit in Massachusetts in 2012 were there because they could not afford bail amounts of less than $500.

The “Overlooked” report highlighted that women in jails are more likely to be mothers, usually leading single-parent households and ultimately facing serious threats to their parental rights.

“That stress affects the entire family and community,” Swavola said.

Citing a Corrections Today study focused on Cook County, Illinois, the authors said incarcerated women with children in foster care were less likely to be reunited with their children than non-incarcerated women with children in foster care.

The sexual abuse and mental health issues faced by women in jails often contribute to further trauma, the authors noted, because women are subjected to body searches and supervision from male prison employees.

“Their experience hurts their prospects of recovering from that,” Swavola said.

And the way survivors might respond to perceived sexual threats—by fighting or attempting to escape—can lead to punishment, especially when jail leaders cannot detect or properly respond to trauma, Swavola and her peers said.

The authors recommend jurisdictions develop gender-responsive policies and other solutions that can help keep women out of jails.

In New York City, police take people arrested for certain non-felony offenses to a precinct, where they receive a desk appearance ticket, or DAT, along with instructions “to appear in court at a later date rather than remaining in custody.”

Andrea James, founder of Families for Justice As Healing and a leader within the National Council For Incarcerated and Formerly Incarcerated Women and Girls, said in an interview with Rewire that solutions must go beyond allowing women to escape police custody and return home to communities that are often fragmented, unhealthy, and dangerous.

Underserved women, James said, need access to healing, transformative environments. She cited as an example the Brookview House, which helps women overcome addiction, untreated trauma, and homelessness.

James, who has advocated against the criminalization of drug use and prostitution, as well as the injustices faced by those in poverty, said the problem of jail misuse could benefit from the insight of real experts on the issue: women and girls who have been incarcerated.

These women and youth, she said, could help researchers better understand the “experiences that brought them to the bunk.”

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