News about non-invasive prenatal diagnosis (NIPD) was a high point in this summer's developments around the global problem of sex selection. A front-page article in the New York Times reported on a study that says a new prenatal genetic testing technique can detect fetal sex extremely early into a pregnancy with a high degree of accuracy – 95% at seven weeks and 99% at 20 weeks.
Quite remarkably, the new technique requires only a maternal blood sample. The test isolates and screens fragments of fetal DNA (known as cell-free fetal DNA or cffDNA) that begin circulating in the mother's blood soon after conception. A simple blood test is of course significantly less invasive than procedures like amniocentesis, which collect amniotic fluid and carry elevated risks of miscarriage.
While NYT and other outlets mention questionable accuracy, cost concerns, and the disappointed parents who've been duped by similar tests, coverage has barely nodded to NIPD's enormous implications. Concerns about how these tests will impact sex selection are written off as issues for countries like China and India, "where boys are prized over girls and fetuses found to be female have been aborted."
Others are telling a different story. In a recent interview with Al Jazeera English, my colleague at the Center for Genetics and Society Marcy Darnovsky noted:
Sex selection is taking place not just in countries in Asia, but it's spreading around the world. And, unfortunately, the United States has become a destination for people who want to escape policies in their own countries that restrict the use of some technologies for what is called 'social sex selection' – sex selection because that's what the parents prefer.
Dr. Sunita Puri has examined sex-selective practices among South Asian families living in the United States, as well as the divergent perspectives of American primary care physicians and sex selection providers about the procedure. Additionally, Mara Hvistendahl's recent book Unnatural Selection provides an unprecedented examination of the severe and globe-spanning consequences of sex selection. Hvistendahl estimates that 160 million girls have gone "missing" because of sex selection due to son preference, largely in China and South Asia. But sex selection also appears to be worsening in a number of regions around the world where development, modernization and access to affordable sex determination technologies are on the rise.
There are also other woefully under-examined questions, including what these seven-week tests might portend about selecting for or against traits other than sex. A test released just last month by biotech company Sequenom uses a similar non-invasive cffDNA early technique to test for Down syndrome. While many applaud "MaterniT21" for making screening for Down's more convenient, few are questioning what it means for parents to have such early knowledge about a fetus. My colleague Emily Beitiks touches on this in her blog this week in Biopolitical Times.
Prenatal genetic testing has been around for decades, as has the disability rights critique of it [1, 2]. But gaining access to genetic information about a fetus so much earlier would be a very significant change. At seven weeks, some women aren't even aware they're pregnant. Many have not yet told people, nor perhaps have they become as emotionally attached to the fetus as they will later on. At such an early stage, a woman can terminate a pregnancy simply by taking a pill. Undergoing a cheap, non-invasive and risk-free test, especially one likely to be sold as the "healthy" or "responsible" choice, might be seen as an inconsequential non-decision.
UC Hastings Law Professor Jaime King critically examines the social implications of NIPD if it becomes a widespread or even standardized part of prenatal care. She writes:
On a national scale, normalizing the offer of NIPD to all pregnant women can create significant pressure on women both to test their fetus and terminate affected fetuses, as the information is available via a risk free medium. This pressure can create a loop-back effect, such that the ease of testing and termination create disapproval for and reduction in support of women with disabled children, which, in turn, may increase the pressure to test.
As more genomic information becomes available at early stages of pregnancy, will parents select for non-medical traits like eye color, skin tone, height, or athletic ability? In such a scenario, one would decide which baby to keep based on whether or not it carries certain preferable and socially valued traits. How would this differ from past eugenic endeavors, which have led to nothing but catastrophe?
Public deliberation and attention from reproductive justice and other civil society advocates are sorely needed if we are to eschew NIPD's potential to exacerbate social discrimination and inequality, and to trivialize fraught questions around testing and sex and trait-selective abortion. And we have to do this while we ardently defend women's right to choose to terminate a pregnancy. The prospect of abusing technology and reproductive freedom to design future generations is a threat to both women's and children's rights and the common good.
Previously on Biopolitical Times:
Posted in Assisted Reproduction, Biotech & Pharma, Disability, Doug Pet's Blog Posts, Eugenics, Genetic Selection, Personal genomics, Reproductive Justice, Health & Rights, Sex Selection
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