So argues the lead editorial of the January edition of the scholarly journal Bioethics. I think the authors are right.
In a succinct, three-page editorial, Wybo Dondorp and Jan van Lith make the case that the traditional bioethical approach to prenatal testing will need to change to address the rapid changes happening with prenatal testing technology.
In perhaps one of the most concise recitation of the bioethical justification and challenges to prenatal testing, Dondorp and van Lith note in less than a page the following:
- Unlike other medical screening tests that allow for disease prevention, prenatal genetic testing does not allow for prevention of disease or suffering;
- Therefore, it has been defended for allowing autonomous reproductive choice, i.e. allowing parents to decide whether to have a child with a disability or to terminate their pregnancies;
- But, this has been critiqued by disability rights advocates as stigmatizing those born with disabilities; and,
- The way prenatal testing has been practiced has been found by numerous studies to not even support the justification of autonomy because parents are not making informed decisions.
Having spent years making this case, citing studies and presenting at conferences around the nation and world, it is validating to see these points made as though they were accepted fact in the lead editorial of a scholarly bioethics journal.
Dondorp and van Lith say all this as background for what the volume then will wrestle with: the rapid changes in prenatal testing. The advent of non-invasive prenatal screening with chromosomal microarray testing means that parents may find out earlier than ever more genetic conditions than ever. But, these conditions can range from those the contributors argue most would find relevant for expectant parents to what most would consider trivial.
How then to deal with this new world of so much prenatal information?
Articles in the issue address the desire of parents wanting testing simply “for information” to another arguing that autonomy should no longer be the justification, but instead be candid that prenatal testing should serve the role of preventing disabilities. Commenting on that latter proposal, Dondrop and van Lith write:
the proposal allows for keeping a drastically downscaled pre-natal screening service in the public health realm, but only for conditions so severe that anyone would agree that providing this service is needed to help prospective parents avoid significant suffering. Down’s syndrome would probably not be on that list.
“Probably.”
In the end, the point of this edition of the journal is that prenatal testing has advanced past what has traditionally been the bioethical justifications for offering it to expectant parents.
The full edition is available for free right now. Feel free to review the articles yourself and share in the comments if you think any of the contributors do propose a valid justification for the new age of prenatal testing.
“but only for conditions so severe that anyone would agree that providing this service is needed to help prospective parents avoid significant suffering. Down’s syndrome would probably not be on that list.”
In the Netherlands (where I live) we have appealed the decision to use the NIPT as a routine screening tool for Down syndrome precisely on this argument (as nr. one of three arguments). According conventional medical definitions Down syndrome cannot be described as a ‘severe condition’ and therefore should not form a ground for routine prenatal screening with the option to terminate pregnancy based on Down syndrome. Full letter: http://downpride.com/appeal-permit-nipt/
Renate, thank you for sharing the link. Please update should a final decision be made.
There are prenatal therapies being developed by Dr J. Paddy Baggot an OB in private practice in LA. He presented on his research at the AAPLOG American Association of Pro-life OB GYN Conference in Washington DC last February.
https://www.youtube.com/watch?v=CbtP076Wi9U
Curious what is to come of this… what is the next step in bioethics? Are the authors agreeing that it is unethical to use prenatal testing to selectively abort for Down syndrome?
Katie–I’ll be reviewing the articles and posting about them. From my initial skim of the articles, though, I would not expect any of them to suggest it is unethical to use prenatal testing to selectively abort for Down syndrome. Feel free to check out my column on my daughter’s paradoxical genes where I show the ethical line drawing between gender and Down syndrome, e.g. that professional statements flat out say it’s unethical to use prenatal testing for sex selection, but in the same year that statement was issued, so too were the guidelines to offer prenatal testing for Down syndrome to all women for the precise purpose of allowing for selective abortion.