It Destroyed My Life: Prenatal Testing and Coerced Abortion
9/2/16
Pressure, Coercion and Other Things That Happen When Expectant Parents Receive A Negative Prenatal Diagnosis
When expectant parents are given a negative diagnosis indicating that their unborn child likely has a disability, illness or other health problem, they are thrown into a situation that is unexpected, confusing and terrifying.
“Pregnant woman and their partners are often unprepared” for the news that their child has a fetal anomaly, note Elizabeth Ring-Cassidy and Ian Gentles in their research on the impact of abortion after prenatal testing. “An abortion undergone in haste and under coercive pressure can have devastating consequences, not only for the parents, but for their other children. Is enough being done to inform women about the implications of prenatal testing, and to provide them with alternative choices to abortion when tests prove positive?”
The answer would seem to be no. In an article on The Witherspoon Institute’s Public Discourse blog, attorney and health care law expert Mark W. Leach noted,
Since 2007, the professional recommendation has been for all expectant mothers to be offered prenatal testing for Down syndrome. A study issued the previous year found that almost half of all obstetricians admitted that their training on prenatal testing was ‘barely adequate’ or ‘non-existent.’ Studies since have shown that prenatal testing for Down syndrome overwhelmingly does not respect a woman’s autonomy. At best, less than half of all expectant mothers make an informed decision in accepting prenatal testing. The most likely outcome following a positive prenatal test, abortion, is rarely mentioned until a positive diagnosis, and then in a rushed, hurried, and often coercive fashion. [emphasis added]
Melinda Tankard Reist, a journalist and women’s rights advocate, notes that prenatal testing is often based on the expectation that women will abort if the diagnosis is negative. In her book Defiant Birth: Women Who Resist Medical Eugenics, she cited a survey that found that over a third of obstetricians in England and Wales said they “generally require a woman to agree to terminate an affected pregnancy before they do prenatal diagnosis.”[1]
Many women, Tankard Reist wrote, perceive prenatal diagnosis not as a choice, but as a standard medical directive. Further, she writes,
[W]hat does so-called “freedom of choice” mean in a society where choices have become so prescribed, where there are fewer and fewer opportunities to opt out, where it is becoming harder to say “no” to certain technologies and the expectations which automatically flow from their application?[2]
She quotes disability activist Tom Shakespeare, who notes that “in hundreds of small ways, the choice is unfree, and the dice is loaded against the birth of disabled children.”[3]
Further, the stress of receiving a negative diagnosis, combined with lack of medical knowledge and the need to rely on health professionals for answers leaves expectant parents vulnerable to suggestions, pressure or even coercion from the experts around them.
Scientist and ethicist Leon Kass reports:
While a small portion of the population may be sufficiently educated to participate knowingly and freely in genetic decisions, most people are and will no doubt always be subject to the benevolent tyranny of expertise. Every expert knows how easy it is to get most people to choose one way or another simply by the way one raises the questions, describes the prognosis, and presents the options. The preferences of counselors will always overtly or subtly shape the choices of the counseled.[4]
This is complicated by the fact that, as noted above, many physicians lack training on how to relay a negative prenatal diagnosis, and either do not have or do not offer up-to-date, balanced and accurate information about the child’s prognosis. A survey of mothers who gave birth to children with Down Syndrome, with the births spanning some 30 years, found that most mothers expressed dissatisfaction with how they were told of the diagnosis. Most also reported being given outdated, limited or negative information that didn’t emphasize any positive aspects of having a child with Down Syndrome.
Women Share Their Stories of Abortion After Prenatal Testing
Women who have had abortions due to fetal anomalies often describe pressure from their doctors to abort and little time to make a decision. Many receive poor information — including outdated or overly negative information about their child’s condition, and little or no information on resources or about those have successfully parented children with the same condition. And many struggle with the experience afterward, often for many years.
One woman who described herself as pro-choice wrote in the London Guardian about being being immediately sent off to a consultant after being told her unborn child had Down Syndrome:
He then told us what the prognosis would be for the child. Life expectancy of 30 or 40. Never being able to look after himself. Likely to have a serious medical problem all his life. And also what the prognosis would mean for [our two-year-old son]. Now a very happy child, he would have a completely different childhood with such a sick sibling.
She was shocked to find out that once they agreed to the abortion, she was expected to take a pill “then and there” to begin the process. And she also described later feelings of grief, guilt, doubt, hatred of pregnant women and anger at the rest of the world.
Another woman who had an abortion after learning her child had Down Syndrome described a similar experience.
I was 26 weeks pregnant when I found out the baby had Down Syndrome. The doctor, my family and a so-called “Christian” counselor thought it would be to my and the baby’s advantage if I had the abortion … The counselor was very pushy and told me I should have an abortion if I really loved my child …
“The abortion was cruel … No one ever told me about all the emotional baggage I would be required to carry for the rest of my life. It destroyed my life! My marriage suffered tremendously and my relationships with others were also affected because I no longer trusted anyone.
As Tankard Reist has pointed out:
Concealing information relevant to a woman’s decision-making and future health should be recognized as an act of coercion. Deceptive information presented as fact; for example, that post-abortion syndrome is a ‘myth,’ also acts coercively on a client. If a woman chooses abortion without having been apprised of the facts about potential harm and suffering, she has not chosen freely: the decision making process has been rendered defective.[5]
This is also true when expectant parents are not given all the information about their unborn child’s diagnosis, including information on the availability of resources and support and information from parents who have continued their pregnancies under similar circumstances.
McGill University professor Margaret Somerville notes:
Informed consent is not present if the information is inadequate — that’s medical negligence (malpractice). And even non-material information must be disclosed if it is raised by a person’s questions, which must be answered honestly and fully. … Consent is never present where intentionally false information is given, especially when it involves consequences and risks — indeed, this can give rise to the legal wrongs of battery and assault. …
Informed consent also requires that the consent be voluntary, that is, not affected by coercion, duress or undue influence. To help ensure the consent is “free,” some American states legally require a “cooling off” period between deciding to have an abortion and its being carried out.
The Need to Protect the Rights of Mothers and Babies
The Elliot Institute has called for legislation that would provide for legal liability for abortion businesses that fail to screen for coercion and other factors (including later abortion and abortion for negative fetal diagnosis) that are known to put women at risk for psychological problems after abortion. For more information on this legislation, visit here.
Learn More
Study: Abortion for Fetal Anomalies Increases Risk of Mental Health Problems
The Impact of Abortion After Prenatal Testing: What the Research Says
Prenatal Testing and Coerced Abortion
Psychiatric Disorders Linked to Abortion for Fetal Anomalies
Women Share Their Stories of Abortion After Prenatal Testing
My Sister Has Down Syndrome, Would Abortion Be Okay?
Resources and Help
5 Things Parents Need to Hear
Encouraging information for parents who have learned their child has Down Syndrome, before or after birth
Defiant Birth: Women Who Resist Medical Eugenics
Book with stories from women who resisted abortion after being pressured to due to the mother’s disability or a poor prenatal diagnosis
Be Not Afraid
An online outreach to parents who have received a poor or difficult prenatal diagnosis. Provides help parents as they seek as they seek to honor the life of their baby, no matter how frail or how brief.
Isaiah’s Promise
Offers support and information to families who have received a severe or fatal prenatal diagnosis. Includes links to other organizations with helpful information.
Anencephaly.net
Online resource with links to multiple resources, articles and information for families who have received a diagnosis of anencephaly.
Anencephaly.info
Offers personal stories, support and information for families who have received a diagnosis of anencephaly. Help for affected parents, caregivers and friends. (Site is available in multiple languages).
Prenatal Partners for Life
A group of concerned parents (most of whom have or had a special needs child), medical professionals, legal professionals and clergy whose aim is to support, inform and encourage expectant or new parents. They offer support by connecting parents facing an adverse diagnosis with other parents who have had the same diagnosis. They have many resources such as adoption agencies with clients waiting to adopt and love a special needs child should a parent feel they could not care for them.
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Citations
1. Melinda Tankard Reist, Defiant Birth: Women Who Resist Medical Eugenics, (North Melbourne, Victoria, Australia: Spinifex Press, 2006) 8.
2. Ibid, 7.
3. Tom Shakespeare, “Manifesto for genetic justice,’ Social Alternatives 18(1): 30, quoted in Defiant Birth, 7
4. L.R. Kass, “The moral meaning of genetic technology,” Commentary 108(2):32-38, 1999.
5. Melinda Tankard Reist, Giving Sorrow Words: Women’s Stories of Grief After Abortion (Springfield, IL: Acorn Books, 2007) 167.
