Fact Sheet: Responses Regarding Poor Prenatal Diagnosis

Charlotte Lozier Institute  

This fact sheet outlines the various responses to a “poor prenatal diagnosis” for a fetal anomaly, noting especially recent medical advances as well as the life-affirming option for perinatal hospice.

 

To view as PDF, please see: Fact Sheet: Responses to Poor Prenatal Diagnosis

 

Abortions of children diagnosed with abnormalities in the womb are eugenic

  • Abortion is used to discriminate against children with abnormalities, applying eugenics.
  • Discrimination against babies diagnosed in utero with Down syndrome is well documented:

France: documented 96% abortion rate for those diagnosed in the womb with Down syndrome.[1]  U.K.: abortion rate for unborn Down syndrome children reported as high as 92%,[2] to 100%.[3] U.S. data: a 2012 study found a weighted mean from 61% up to 93% of those diagnosed in the womb with Down syndrome were aborted.[4] A new report, using rigorous statistical modeling of the sparse U.S. data from 2006-2010, finds that abortion after prenatal diagnosis has reduced the population of individuals living with Down syndrome in the U.S. by approximately 30%.[5]

  • Similar rates of selection against life are seen for babies diagnosed in the womb with other genetic conditions, or with physical abnormalities. This is modern eugenic selection.

 

The term “incompatible with life” is a judgment, not a medical diagnosis

  • Doctors often use the term “incompatible with life” to describe children diagnosed in the womb with a lethal or potentially lethal condition. The term is a value judgment on a child’s life.  It is “medically meaningless, incorrect, and enormously hurtful.”[6]  It conveys an attitude, not reality.
  • A study in Critical Care Medicine noted that what doctors tell parents about their child’s prognosis is often influenced by the doctor’s own attitude toward neurological impairment.[7]
  • A recent study by Skotko et al. found that 99% of people with Down syndrome are happy with their lives, 99% of parents said they love their child with Down syndrome, and 97% of brothers/sisters, ages 9-11, said they love their sibling.[8]
  • Disability rights groups in an amicus curiae brief filed in 2013 with the Supreme Court:[9]“Though some abortions of children with disabilities involve diagnoses that are likely to be fatal, many involve non-fatal conditions such as Down syndrome, cystic fibrosis, and spina bifida.”
  • Even in these non-fatal cases, “recent evidence suggests that as many as 95 percent of parents receiving a prenatal diagnosis of cystic fibrosis elect to terminate the child.” The Supreme Court “has never endorsed a right to abort children only because they have been detected to have a disability.”

 

There are hopeful alternatives to abortion for young preborn patients

  • A study in Pediatrics regarding children with trisomies notes: “Despite the conventional understanding of these syndromes as lethal, a substantial number of children are living longer than 1 year and undergoing medical and surgical procedures as part of their treatment.”[10]
  • Bradford lists several clinical trials, all begun within the last five years, with drugs that show promise to improve cognition for individuals affected by Down syndrome.[11]
  • Fetal surgery is undergoing a rapid expansion as more doctors and parents realize the possibility, and even advantage, of surgery while the child is still within the womb.[12]
  • Some conditions, including genetic abnormalities such as severe immune deficiencies[13]and osteogenesis imperfecta,[14] are now treated in the womb using adult stem cells or gene therapy.

 

Perinatal hospice is the proper response to lethal anomalies. Even a brief life has meaning.

  • Abortion does not resolve cases where a lethal fetal anomaly exists; abortion destroys one of the patients — the youngest. Patients and their families can and should be offered the option of perinatal hospice to support them in the same way we do families with an adult member for whom treatment has become futile.[15]
  • There are at least 196 perinatal hospice programs in the United States.[16]

 

Late term abortions are NOT primarily due to discovery of fetal abnormalities or health of the expectant mother

  • Priscilla Coleman in 2010 (citing the Guttmacher Institute): “[T]he vast majority of late-term abortions are performed for socio-economic reasons, on a healthy and potentially viable fetus.”  “Fetal abnormalities or woman’s health considerations are rarely the reason for undergoing a late-term abortion.”[17]
  • Elizabeth Johnson in 2015: Women seek abortion because of the stress of “unprepared pregnancy, single-motherhood, financial pressure and relationship discord.”  Moreover, these stresses “are not fundamentally alleviated or ameliorated by late-term abortion.  Late-term abortion places these women at greater risk of surgical complications, subsequent preterm birth, and mental health problems, while simultaneously ending the life of an unborn child.”[18]

 

[1] Bradford M. Improving Joyful Lives: Society’s Response to Difference and Disability, American Reports Series Issue 8, June 2014, accessed at: https://www.lozierinstitute.org/improving-joyful-lives-societys-response-to-difference-and-disability/

[2] Mansfield C et al. Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review, Prenatal Diagnosis 19, 808, 1999

[3] Nicolaides KH et al. Noninvasive prenatal testing for fetal trisomies in a routinely screened first-trimester population. Am J Obstet Gynecol 207, 374.e1, 2012

[4] Natoli JL et al. Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995-2011), Prenatal Diagnosis 32, 142, 2012

[5] de Graaf G et al. Estimates of the live births, natural losses, and elective terminations with down syndrome in the United States. Am J Med Genet Part A 167A, 756, 2015

[6] Sullivan N. The Term “Incompatible with Life” is Incompatible with the Best Care, December 2014, Accessed at: https://www.lozierinstitute.org/the-term-incompatible-with-life-is-incompatible-with-the-best-care/

[7] Randolph AG et al. Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit, Crit. Care Med. 25, 435, 1997

[8] Skotko BG et al. Self Perceptions from People with Down Syndrome, American Journal of Medical Genetics Part A 155, 2360, 2011

[9] Donovan CA and Messner T. Twenty-Week Bans Raise Issue of Disability Discrimination Abortion, Charlotte Lozier Institute On Point Series 4; November 2013. Accessed at: https://www.lozierinstitute.org/twenty-week-bans-raise-issue-of-disability-discrimination-abortion-2/ Original brief accessed at: http://sblog.s3.amazonaws.com/wp-content/uploads/2013/11/FILED-AmicusLeJeuneSDiDSC-BDF.pdf, filed by the Bioethics Defense Fund, Scottsdale, Arizona, http://www.bdfund.org/

[10] Nelson KE et al. Inpatient Hospital Care of Children With Trisomy 13 and Trisomy 18 in the United States, Pediatrics 129, 869, 2012

[11] Bradford M. Ibid

[12] See, e.g., the Center for Fetal Diagnosis and Treatment, Children’s Hospital of Philadelphia, accessed at: http://www.chop.edu/centers-programs/center-fetal-diagnosis-and-treatment

[13] Loukogeorgakis SP and Flake AW. In utero stem cell and gene therapy: Current status and future perspectives, Eur J Pediatr Surg 24, 237, 2014

[14] Chan JKY and Götherström C. Prenatal transplantation of mesenchymal stem cells to treat osteogenesis imperfecta, Frontiers in Pharmacology 5, 1, October 2014

[15] Calhoun B. The Perinatal Hospice: Allowing Parents to be Parents, Charlotte Lozier Institute American Reports Series 1, May 2012. Accessed at https://www.lozierinstitute.org/the-perinatal-hospice.

[16] Perinatal Hospice and Palliative Care: A Gift of Time, accessed at: http://perinatalhospice.org/Perinatal_hospices.html

[17] Coleman PK. Late-term Abortion: Antecedent Conditions and Consequences to Women’s Health, The Human Family Research Center, October 2010.  Accessed at: http://humanfamilyresearch.org/HFRC%20womens%20health%20and%20late-term%20abortion.pdf

[18] Johnson E. The Reality of Late-Term Abortion Procedures, Charlotte Lozier Institute On Point Series 9, January 2015; accessed at: https://www.lozierinstitute.org/the-reality-of-late-term-abortion-procedures/

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