Prenatal testing for Down syndrome: does it respect a woman’s right to choose?

check yes or noPrenatal testing for Down syndrome is ethically premised on respecting a woman’s autonomy, her right to choose how to manage her pregnancy. Is that right to choose being respected if the woman does not know she had prenatal testing or does not understand the results?

Those are the results of two studies presented at the 2014 Society for Maternal-Fetal Medicine.

The first study had a title that raises a concern all by itself:

Prenatal screening for aneuploidy: do women know what’s been done?

Having to ask the question, alone, suggests ethical problems with how prenatal testing is being done. And, the results bore out those concerns.

The authors found that 22% of the surveyed population of moms who had first trimester prenatal testing either were incorrect or unsure of whether they had had it.

Let that sink in.

For every five patients who were seen, counseled, and then underwent first trimester prenatal testing, one of them thought she had not had prenatal testing.

It seems pretty fundamental that to respect a woman’s right to choose about her pregnancy, she must first know she is making a choice. But this study found 22% either did not know they had accepted prenatal testing or were unsure of whether they had.

The second study is of the same surveyed population of moms. It’s title is no less troubling:

Prenatal testing results: what do women understand?

Again, it would seem fundamental in the administration of a technology whose main ethical basis is providing information so the mother can make decisions of whether to terminate or continue her pregnancy, that the mother would understand the test results. But, that’s not what the authors found for a significant percentage of moms.

For moms undergoing first trimester screening to get a recalculation of the probability of whether their child had Down syndrome, here’s what the moms understood:

  • 20% reported not receiving or not remembering whether they received a numerical result, e.g. 1-in-250.
  • 2% had incorrect recall
  • 42% were given a numerical result, but could not recall it
  • 36% correctly recalled their results

So, only a third, 1-out-of-3 moms, correctly recalled their results; 2/3 could not recall correctly what their results were.

Moreover, 10%, 1-in-10, of the women believed their test results were true positives or true negatives, not screen results.

Two contributing factors were cited in both studies for the failure to understand whether they had had testing or what the test results were. If the women were publicly insured, e.g. Medicaid, and if they were Spanish-speaking, both factors added to the likelihood of not understanding whether they had made a choice or understood the test results.

Credit to the researchers

Credit should be given to the authors for asking these fundamental questions. One particularly, Mary Norton, has advised non-invasive prenatal screening laboratories. She, no doubt, understands how these study results of misunderstanding test results as true positives and negatives are likely only exacerbated by NIPS labs marketing and how NIPS results are reported as “positive” or “negative.”

I do not think it far-fetched to imagine that moms in that 10% who believed their results were true negatives or true positives likely included some of the 2% of moms who had incorrect recall. So, imagine that a mom incorrectly understands her test to be a positive when it is a negative, and believes it to truly be a positive, and then makes the choice most women currently do following a positive prenatal test result for Down syndrome and aborts. These decisions are currently being made based on non-invasive prenatal screening results without having diagnostic confirmation due to the marketing of NIPS as being 99+% accurate. 

These studies are yet another piece of evidence that prenatal testing is not being administered ethically. Prenatal testing is premised on respecting a woman’s autonomy–her ability to control her pregnancy based on the information prenatal testing provides. But, if the woman does not even understand that she made a choice, or does not understand the results of that choice, how is prenatal testing ethically justified?

Comments

  1. You have submitted a racist and scientifically inaccurate post here.

    The first study, you have wholly omitted the significant finding that the confusion of whether a mother has been screened or not is due to socio-economic status and language barriers. That’s not confusion; it’s institutional racism and classism and has very little to do with the ethics of prenatal testing.

    You state that for every five patients one doesn’t know if they have been screened, but that is logically incorrect as discrete patient groups has been parsed out in the study, again that you haven’t mentioned.

    The second study again focuses on the racial composition as a significant factor of understanding the results as positive or negative (Spanish speaking latinas ..).

    Why have you disregarded what is clearly an issue of racial discrimination that is consistent with lack of clear communication across multiple medical fields and practices? You don’t even mention race as a factor in your write-up when that is the thrust of both studies?

    Also, this junk “So, imagine that a mom incorrectly understands her test to be a positive when it is a negative, and believes it to truly be a positive, and then makes the choice most women currently do following a positive prenatal test result for Down syndrome and aborts”

    This is leap that defies any type of logical or practical science thinking. Indeed, what you’ve written has no basis in research.

    – How many women abort based on solely on NIPTs? Source? (none, author’s fantasy statistics)
    – How many women made follow-up calls to for further clarification? (research doesn’t factor this)
    – How many Latinas abort (aborted?) due to miscommunication between the NIPTs results and the medical provider (research doesn’t exist)
    – “choice most women do following a positive prenatal test” – the research available on the rate of terminations of positive t21 diagnosis are all based on decisions from CVS and/or amniocentesis, not singularly on NIPTs.

    This is a deep disservice to the DS community to put this out there. It shows a complete disregard for actual facts and logic, which does nothing to help those who have DS or the families and caregivers who support them.

    It also reinforces the homogenous view of DS as a white-centered advocacy network.

    • To clarify, the studies do not say that only those women on public insurance or that are Spanish-speakers did not know they had had prenatal testing or did not recall their test results; they cite those as contributing factors, but not exclusive factors. Regarding decisions being made to abort after just NIPS, this was reported in ACOG’s journal around this time last year (I just can’t find the link) and it was presented at last year’s ACMG meeting in a case study. Further, practitioners told us this was happening when we attended the SMFM meeting this year. So, my conjecture has a reasonable basis. That said, I agree with you that the studies also show a discriminatory/structurally violent construct in which prenatal testing is conducted with those of lower socioeconomic or minority background–which only further supports my main point that the studies show the way prenatal testing is being done is not ethical because it is not respecting women’s ability to make choices.

  2. I see no discriminatory constructs in the prenatal testing. I do see discrimination across the medical field towards non-english speaking, non-white patients, but this happened across the board.

    Which leads to the qursti

  3. To the question, why did you purposely omit the racial factor in your post, when it is a dominant portion of the report?

    Are you not just part of the problem that tries to erase certain differences to further your agenda?

    The tests are being given equally so they are not ethically problematic. What choices for women are being impeded?

Trackbacks

  1. […] choices by a significant number of expectant mothers who accept it. Patients report not recalling choosing to accept prenatal testing, not understanding the results, not expecting to be confronted with a […]

  2. […] under current counseling women were not making informed decisions about prenatal testing, some not knowing they had undergone it. But, to my knowledge, only one other study had shown that when expectant […]

Leave a Reply

%d bloggers like this: