A recent report published by the UK’s Nuffield Council on Bioethics expresses concern over Non-Invasive Prenatal Testing (NIPT), a new method of fetal analysis that supporters of the report fear may leave open doors in pregnancy testing and fetus selection.[1] The report highlights the growing concern that uncovering even the slightest genetic flaw “amounts to eugenics.”[1]
NIPT, a non-invasive prenatal test, utilizes blood drawn from the mother in order to look at the baby’s DNA circulating in her blood.[2,3] The test, which has proved more accurate compared to other forms of non-invasive testing, predicts the chance that a fetus has a chromosomal and genetic abnormality such as Down's, Edwards' or Patau's syndromes.[4] Additionally, other genetic conditions such as cystic fibrosis can be recognized, as can the sex of the fetus.[3,4]
The tests are typically offered between the 9th and 13th week of pregnancy and can be done at the same time as a routine 12-week scan.[1] With a 99 percent accuracy, NIPT is a promising development for many doctors and parents with the potential to revolutionize prenatal testing.[1] Additionally, NIPT could eliminate the need to perform invasive tests such as amniocentesis or CSV to look for fetal abnormalities.[4] These procedures involve notable risk, with around 1 in every 200 invasive tests resulting in a miscarriage.[4] Currently, more than 90 percent of women who receive a positive amniocentesis test for a disorder get an abortion, but due to the risk of miscarriage, only around half of women offered the test have it done.[5] Therefore, doctors are hopeful that NIPT will help reduce miscarriage while providing earlier, accurate results.
NIPT is already available across the UK in private hospitals and clinics and has been piloted as a second-stage screening test in some National Health Service (NHS) hospitals.[2,4] The results of the pilot test predict that it could aid in the identification of nearly 200 more fetuses with Down’s each year, resulting in over 3,000 fewer invasive tests.[2] Last year, the NHS announced that in 2018, it will expand its NIPT program, offering the test to pregnant women who have at least a 1 in 150 likelihood of carrying a fetus with Down’s, Patau’s, or Edwards’ syndromes.[2,4]
Noting NIPT’s ability to more readily identify the presence of genetic disorders, the Nuffield Council’s report highlights the fact that “introducing NIPT in the NHS could lead to an increase in the number of terminations following a diagnosis of Down’s, Edwards’ or Patau’s syndrome.”[1] While termination of pregnancy is a difficult and personal decision, the report argues that “the information currently provided to women and couples is frequently incomplete, unsubstantiated, inaccurate or misleading.”[3,4] For instance, healthcare providers tend to focus on the medical problems associated with the disease rather than what daily life with the child will be like.[2]
Additionally, concerned that NIPT may provide an opportunity for fetus selection and termination based on gender, the report called for a moratorium on using NIPT for anything other than to test for the three syndromes identified by the NHS.[1,4] According to experts, some practices offer full-genome sequencing on fetuses, which, in time, could lead to the abuse of NIPT to create “designer babies.”[1] Professor Tom Shakespeare, the lead author of the report and professor of disability research at the University of East Anglia, acknowledges this concern, stating, “if the test is used without limits for other kinds of genetic conditions and traits, it could lead to more anxiety, more invasive diagnostic tests, and could change what we think of as a “healthy” or “normal” baby. We therefore think the test should generally be used only for significant medical conditions that would affect a baby at birth or in childhood.”[1,4] Furthermore, noting his support of a ban on using the test to find out the sex of the fetus, Shakespeare commented that while few people would choose to have an abortion when told the child’s sex at the 20-week scan, “at 10 weeks an abortion is much easier.”[1]
While the Nuffield Council report argues strongly against the use of NIPT for purposes other than the diagnosis of Down’s, Patau’s, or Edwards’ syndromes, other groups have criticized the report’s claims. The British Pregnancy Advisory Service noted that “there is no peer-reviewed evidence of sex-selective abortion taking place in the UK.”[3] A spokesman for the group further described the report as “disappointing” and characterized it as displaying “a mistrust of women and the reproductive choices they make.”[1] Groups like BPAS emphasize the need to have faith in women to make sound, ethical choices about their pregnancies, and developments like NIPT can help facilitate those decisions while reducing the risk of invasive testing.
Sources:
- Spencer, Ben. “Down's test 'used to choose gender': Warning checks for the condition are driving an 'arms race' to create the perfect baby.” The Daily Mail. Published February 28, 2017. http://www.dailymail.co.uk/health/article-4269790/Down-s-test-used-choose-gender.html
- Stephenson, Jo. “Nurses need training on pioneering prenatal screening test.” Nursing Times. Published March 1, 2017. https://www.nursingtimes.net/news/education/nurses-need-training-on-pioneering-prenatal-screening-test/7016098.article
- “Women warned about private Down's syndrome tests.” BBC News. Published March 1, 2017. http://www.bbc.com/news/health-39113256
- “New pregnancy testing technique needs limits says ethics body.” EurekAlert. Published February 28, 2017. https://www.eurekalert.org/pub_releases/2017-02/ncob-npt022817.php
- Birrell, Ian. “Writer Ian Birrell, whose daughter was born severely disabled, voices his concerns about Non-Invasive Prenatal Testing.” The Daily Mail. Published March 1, 2017. http://www.dailymail.co.uk/femail/article-4272842/IAN-BIRRELL-new-s-test-slippery-slope-eugenics.html