Mary Harris reported on a woman that launched the search for a prenatal test for Down syndrome. While some key corrections should be made for any future reports, overall, Harris’ is a piece of reporting to be appreciated.
Harris’ report features Lee Herzenberg, a scientist and mother of a 54 year-old son with Down syndrome named Michael. Michael’s birth spurred Herzenberg and her husband to seek a non-invasive test for Down syndrome.
Lee’s husband Len Herzenberg was a scientist at Stanford University when Michael was born. Lee would go on to be trained alongside Len in his laboratory and the two would make developments in biotechnologies. One development was a machine they designed that rapidly sorts human cells.
It was through this technology that they were able to sort and find intact fetal cells from a maternal blood sample. Having an actual cell from a fetus offered the promise of a truly non-invasive diagnostic test. The medical student who helped with this initial research, Diana Bianchi, years later would be one of the pioneers in developing noninvasive prenatal screening.
When Michael was born, the Herzenbergs decided they would not bring him home. Harris asks Lee why, and Herzenberg candidly admits it was a “selfish decision.” But, before discussing that, there are few corrections to be noted (particularly if Harris reads this post) to improve the accuracy of future reporting.
- Not fetal DNA, exactly: Harris mistakenly refers to the free floating DNA found in the mother’s bloodstream as “fetal DNA.” It has been known since 2013 and re-affirmed in May 2016 by the American College of Obstetricians & Gynecologists that the free floating DNA is derived from the placenta, which may be from the fetus, but not necessarily so. It is for this reason that cell free DNA (cfDNA) screening remains just that, a screening test, reporting false positives and false negatives. (It is also why research continues into developing a prenatal test based on actual fetal cells)
- Less than 90% but more terminations than ever: In the radio version, it notes that the oft-quoted statistic that 90% of women with a prenatal diagnosis of Down syndrome terminate is incorrect. The print copy accompanying the report then states “In the United States, far fewer women terminate.” The word “fewer” relates to quantity not percentage. It is true that the most recent research suggests that the termination rate following a prenatal diagnosis is less than 90%. However, due to the broader offering of prenatal testing since that 90% figure was reported, there have never been more women choosing to terminate following a prenatal diagnosis–even when the rate was 90%. This dynamic is explained in greater detail at this post.
- The DSIA: Finally, Harris reports on a law requiring information to be provided to patients receiving a test result for Down syndrome. The law is the Down Syndrome Information Act (DSIA) and Harris’ report highlights Pennsylvania’s version. Massachusetts passed the first DSIA in 2012 and twelve other states have passed their versions since then. The Pennsylvania law has been criticized, and the coupling of the DSIA with those laws seeking to ban Down syndrome abortions–as Harris’ report does in context–ignores the different advocates, purposes, and actual effectiveness of the different legislative measures. A survey I conducted of these laws was published near-in-time to Harris’ report in the American Association on Intellectual and Developmental Disabilities Journal. It covers the history of these laws, their variations, and their relative merits. (While this is not exactly a correction, familiarization with the actual DSIA versions will lead to more accurate reporting about them).
Harris lets Herzenberg’s statements stand in contrast to themselves. Herzenberg says she is certain she would have aborted had she known prenatally that Michael had Down syndrome. She admits to the relatively quick and certain decision she and her husband made to not bring him home. Herzenberg states matter-of-factly that she “see[s] no reason Michael has to live the life he leads … I don’t think it’s fair or proper.”
Yet, in admitting that her decision to not care for Michael was selfish, she justifies it by all of the scientific study that she and her husband undoubtedly (to her) would not have been able to have completed if caring for Michael. Herzenberg says she was “emotionally committed to science” and nothing she could do could change Michael’s chromosomal condition so he would be “normal.” As she puts it,
It’s a gift to being doing science. It’s a gift to understand the physical and biological world.
To the skeptical, critical listener, it should cause him or her to question Herzenberg’s certitude about a life that she never used her scientific inquiry to prove or disprove her hypothesis that Michael’s life is not one he should have to live and is not a “normal” life. She never examined Michael’s physical and biological world, beyond him simply having an extra 21st Chromosome.
To Harris’ credit, Michael does not remain an unknown child sent off to be raised by someone else. Instead, Harris accompanies Herzenberg on a visit with Michael. Harris reports that Michael can read and use a cell phone. She leaves in the audio of Herzenberg getting lost on the way to Michael’s group home in the community, and being unsure of whether they are at the right house (which could be attributed to Herzenberg’s 80+ years, the confusion of having a reporter along for the visit, or perhaps the lack of attention Herzenberg has given her son, whom Harris notes lives just 30 minutes from Herzenberg).
What I found equally commendable was Harris’ confessional reporting about her own two pregnancies. How she had the prenatal screening available at the time of her first born, which was then nuchal translucency; and, then, how with her second, cfDNA screening had entered the marketplace.
Harris admits that prenatal testing poses hard questions to parents. She concludes that in reality, while the administration of prenatal testing seems to promise reassurance that parents seek to ensure a healthy pregnancy, that reassurance may be illusory. She notes that no child becomes the child their parents had expected him or her to be.
Harris finishes her report by simply noting that all prenatal testing for Down syndrome does is tell the parents earlier that their child will not be what they were expecting.
Hopefully, expectant parents will be more rigorous than Herzenberg in their own use of the scientific method.
Hopefully, upon learning their child is not what they expected, they will seek further information, accurate information, about living a life with Down syndrome and what they can expect for their child’s life and their lives.
For the recommended resources for that information, please see the links at the Prenatal Resources tab.