Spring cleaning suggests that is the season when cleaning gets done. But, as an attorney, the holidays often provide a lull where we can bring some order to the stacks of papers that have accumulated throughout the year. In doing so, I found a study that I read quite some time ago, but is one that I think you will find of note.
The article’s title is “Women’s views on the moral status of nature in the context of prenatal screening decisions,” and its authors are Elisa Garcia, Danielle Timmermans, and Evert van Leewen, all of the Netherlands [which I recently learned encompasses more than just the term “Dutch” as well as “Holland” from this interesting youtube video]. The article explored the view pregnant women had of the moral authority of nature versus their ability to control the outcomes of their pregnancies. The study informs what can guide decisions about prenatal testing and those following a prenatal test.
Prior to the availability of prenatal testing, I believe it was Adrianne Asch who wrote that Down syndrome was not even a concern for pregnant women, for the simple fact that they could not know if they were carrying a child with Down syndrome. Instead, as the study puts it, “the genetic constitution and health status of the fetus were left to the regulation of nature, deity, destiny or blind chance.” The ability to know prenatally through testing “profoundly changed” the pregnancy experience.
The authors perhaps simplify the view of nature into one that is binary. In the first view, there is an inherent morality in nature such that “humans should have no say in the outcome or make-up of a child. They must simply accept the ‘gift’ that is provided”. On the other hand, the second view is that nature is of neutral worth that “proceeds without purpose or any guidance in matters of good and bad.” As a result, some ascribe certain features necessary for the flourishing of human nature, and, consequently, “[d]isability is portrayed as an undesirable condition” that limits having a fully human existence. Prenatal testing “is seen as a chance to exert rational control over the undesirable characteristics of human offspring”.
The authors sought to see how these two views may impact decisions about prenatal testing by interviewing 59 women chosen through a randomized control trial following their decision whether to accept prenatal testing.
For those who believed that the health status of the fetus was determined by nature or God, the participants both accepted and denied prenatal testing. One decliner expressed the view that still others should be free to accept and terminate because “I think that nature sometimes makes mistakes that even God should disapprove.” Others, however, trusted that nature would eliminate severely disabled fetuses through spontaneous abortion, but, where nature does not do its job, some said that parents should decide for themselves through prenatal testing. Where there was a difference in accepting or declining prenatal testing, those who declined “feared that attempts to control everything might result in unforeseen consequences.”
The authors reported that “participants believed that disability is not without value because it helps people to value the positive things in life.” Again, decliners of testing differed with accepters in that decliners believed they could care for a child with Down syndrome, but accepters considered “care for a disabled child as an unbearable burden.”
One key paragraph from the report deserves to be quoted in full:
Both acceptors and decliners reported that women have a duty to seek available prenatal care. They did not link this responsibility with the use of testing because it does not contribute to the health of the fetus.
(A point I raise in the questions submitted on the EHB regulation).
Discussing their findings, the authors found that regardless of views on the moral authority of nature–i.e. the belief that things happen for a reason and nature should be allowed to run its course–participants still believed there was a point for intervening when the disability was severe enough. Therein lies the challenge, since, as one woman put it, “Down’s syndrome has many gradations. This makes it more difficult to know what is acceptable and unacceptable.”
In conclusion, the authors disputed that women using prenatal testing do not make well-considered decisions; from their interviews, they found that women feel responsible and that “[t]heir decisions are grounded in their perception of the capacity to ensure a good life both for their child and their family.” Therefore, the authors believe that the discussion about prenatal testing should instead focus on “women’s views about the characteristics that are necessary and those that are an impediment for a good life.”
No doubt, many will read this and have a reflex one way or the other. Some, likely many, will say that drawing such lines of what is too severe of a disability is exactly the arbitrary process that critics have of prenatal testing, since many views of the disabled are out-dated, based on a lack of exposure to the modern life lived by those with the condition, and systematically skewed by a disability-averse society and medical culture in which prenatal testing is administered. The reverse reflex position is that those who put their faith entirely in nature running its course may very likely be condemning their child and themselves to a life of suffering, which is equally blame-worthy, and that no one can truly say what they would do until they find themselves confronted with having to make that decision. Again, these are commonly expressed positions, but that is not what I think the value is of this study.
Instead, what I find informative about this study is the insight it provides into the actual experience of those undergoing prenatal testing. It reveals some of the concerns and factors considered when deciding whether to accept or decline testing and the decisions that follow therefrom. It demonstrates that for many, appeals to nature will be of no persuasive value (and very likely will only turn off a patient trying to make a decision based on their own world view). It does not, and should not, matter if you believe that their world view is wrong–that is not going to change their view in the relatively short window of time in which prenatal testing is administered. Instead, the study counsels towards meeting patients where they are, not where you are; addressing their concerns, not making points to advance your argument; and, if they have concerns about the severity of a condition, providing them accurate information and referral to available support systems and organizations so that when they make their decision, it is based on an accurate assessment of the severity and perceived burden of raising their child.
Question: for those who believe in the second view, that mankind should bend nature to its will to maximize human flourishing, what should be shared about Down syndrome following a prenatal test result?
Accurate, i.e. factual and current information, both from medical and social sources, should be considered in determining the best outcome in decision-making. If outdated myths are still considered, faulty reasoning may result in unfounded fear, which then leads to an unnecessary and tragic result. It is vital that patients receive from their trusted medical professionals information on Down syndrome that is factual and not outdated. Information should also include referrals to local groups that focus on serving those with Down syndrome and their families.