<Table Of Contents

Reflection on the T4 Program and My Prenatal Choices

by Melanie D'Mello, 2023 Business Fellow

This spring when I visited the Brandenburg site with FASPE, I was pregnant. Shortly before the trip I had received the results of my NIPT, a non-invasive blood test giving information about potential fetal chromosomal abnormalities, including trisomy 21, commonly known as Down syndrome.

During the Nazi period, Brandenburg was a T4 facility where nurses and doctors euthanized mentally and/or physically disabled people ranging from 2-94 years old. The program even helped develop the gassing techniques later used in death camps. The rationale for the killings was that the patients were living a life of suffering (potentially an unworthy life) and were a burden to society (they required extra care and were not active participants in the economy). All the medical practitioners involved had the choice to refuse participation in the program at any time. Mostly they thought they were doing the right thing.

Visiting the site unexpectedly put me in a quandary over my own choice: did conducting prenatal testing and considering aborting a child with chromosomal abnormalities mimic the logic at play here?

Prior to conceiving, my husband and I had talked about whether we would terminate the pregnancy if the tests showed a risk for trisomy or other chromosomal abnormalities. I always felt that, in my case, the answer was crystal clear: I would terminate the pregnancy. My rationale was that I wanted to protect my family and my marriage. The idea of raising a child that has special needs and requires constant care from at least one of the parents would put a strain on our marriage and prevent us from having the time and resources to raise another child, thereby “endangering” our hypothetical family. It felt unfair to subsequent children. Reflecting on that day at Brandenburg, I wondered why I would so vehemently defend the needs of a potential future sibling over the needs of a conceived disabled child. I felt uneasy that my reasoning mirrored that of the Nazi administration: an individual with disabilities is a burden to society (i.e., my husband and me).

There are many layers and permutations in this hypothetical situation: the condition itself, life expectancy, whether the child would physically suffer from its condition, as well as the resources locally available to parents to help accommodate the child’s special needs. To further complicate matters, current testing cannot predict the severity of complications for a fetus with Down syndrome, which vary greatly from one child to another.

Returning to my situation, I did not deeply consider the ethical issues associated with a pre-natal genetic screening conducted at nine weeks of gestation. My husband and I had been through several miscarriages before, and I viscerally needed to know whether this pregnancy would be viable (70 to 80% of miscarriages are caused by chromosomal abnormalities). The test came back. Everything was normal. It was a somewhat of a relief (one milestone achieved, many others to come).

However, when visiting Brandenburg, a myriad of questions swirled in my mind: what would I have done if the test showed elevated risks? More specifically, why was it so acceptable to abort an in-utero child with disabilities when there was a unanimous consensus that euthanizing a born child aged two years old and older was murder?1

Ultimately, I wanted to understand if there was a clear ethical distinction in what at first glance seemed a difference of “posture” or “framing” with regard to how we viewed abortion as opposed to the euthanasia conducted at Brandenburg. First, I conducted some research about the ethical concerns raised by the NIPT test. I then researched testimonies of parents with Down syndrome children. The few studies and testimonies I gathered took place in the 1970s and 1980s, a time when Roe v. Wade was at the center of the public discourse, as it is today.

The NIPT test can only evaluate the risks of the fetus being affected by a chromosome abnormality, not the severity of its condition. According to my research, there is currently no possibility of knowing the severity of the condition; no one is sure of a path forward in this regard. A child with, for example, Down syndrome may have substantial difficulties and complications or have a fulfilling and largely autonomous life.

Other advances in medical technology have put forward ethical concerns around the future of pre-natal genetic screening. Such screenings are routinely conducted in IVF procedures to determine which embryos have the best chances of successfully implanting. Such medical advances raise questions and concerns whether future parents will soon be able to use these genetic screenings to select other attributes such as eye color, hair color, IQ, etc. Should these become possible, the case would obviously veer closer to Nazi “race selection.”

To bring this back to the NIPT test, there may be ethical concerns if the test becomes a routine pregnancy test. In this scenario, people might uncritically adopt the test, using it even in cases where there are no antecedent miscarriages or known risks for chromosomal abnormalities. “The risk of routinization could undermine reproductive choices and increase discrimination against children living with trisomy. This risk is particularly elevated since the NIPT test is non-invasive; it is a simple blood test that does not physically endanger the fetus or the mother.”2

Perhaps an answer might arise regarding ethical use through an investigation of different nations’ approaches to related bioethical situations. As a result, my investigation into existing sources took me in this direction. Each country weighs the freedom to terminate against other principles and values such as human dignity, disability rights and health care professionals’ duty of care. While many countries and cultures value reproductive autonomy, the way such concept is understood and implemented is influenced by socio-cultural context.

For example, we might turn to this research undertaken in the Netherlands:

The following study addresses women’s perspectives on prenatal screening with NIPT by evaluating three aspects related to routinization: informed choice, freedom to choose, and (personal and societal) perspectives on Down’s syndrome. Nationwide, a questionnaire was completed by 751 pregnant women after receiving counseling for prenatal screening. Of the respondents, the majority (75.5%) made an informed choice for prenatal screening as measured by the multidimensional measure of informed choice (MMIC). Education level and religious affiliation were significant predictors of informed choice. The main reason to accept screening was “seeking reassurance” (25.5%), and the main reason to decline was “every child is welcome” (30.6%).” Most respondents (87.7%) did not perceive societal pressure to test. Differences between test-acceptors and test-decliners in personal and societal perspectives on Down’s syndrome were found. Our study revealed high rates of informed decision-making and perceived freedom to choose regarding fetal aneuploidy screening, suggesting that there is little reason for concern about routinization of NIPT based on the perspectives of Dutch pregnant women. Our findings highlight the importance of responsible implementation of NIPT within a national screening program.3

Another study also conducted in the Netherlands by E. Garcia came to a similar conclusion that “the increased use of the NIPT tests had no negative effect on Dutch women’s reproductive autonomy,”4 though it is not clear if this trend will always hold.

Having looked at some numbers, I was interested to dive deeper in testimonies from parents with Down syndrome children, especially at a time when abortion was newly available to women. In this way, I hoped to know more about their views on disability-selective abortion and its relationship to Nazi euthanasia campaigns.

To this end, I looked at the following study, which was published in the Journal of Medical Ethics in 1983 and conducted over several years:

In 1972 a study (unpublished) was made of Down's syndrome children born in the years 1964-66 and living with their parents in South Wales. Two new studies based on this work were carried out in 1981. For the re-study contact was again made with all Down's syndrome children living with their parents and born in 1964-66 and, in addition, a new sample of all Down's syndrome children born in the years 1973-75 was also studied.5

This study included 78 parents with children aged from 8-16. Mothers were asked: “How do you feel about abortion after an amniocentesis test has shown a mother is carrying a handicapped child?”6 Researchers also asked parents whether they felt that the life-saving care routinely extended to babies should be definitively extended to handicapped babies. If they did not agree with this extension, they were asked if Down syndrome is severe enough to allow such a baby to die without such care.

The study found that, “while most were in favor of abortion for a severely disabled fetus, they were equally divided on whether euthanasia”7 was an acceptable practice. There was an array of (emotional) reasons why the parents were not pressed to make the distinction between killing a baby and letting the infant die. Even though according to many, “there is little moral difference between active (euthanasia, abortion) and passive killing (refusing basic care).”8

At the time of the study little help was available from the government and medical/educational institutions to raise a child with special needs. With this in mind, the researchers also note that care options were substantially limited in the decades leading up to the survey, meaning that stresses on parents may have been greater when their now-older children were younger. Those with children born in the 1960s frequently mentioned this problem: “They didn't ask me if I wanted her. They said ‘Well you can't leave him here’ (in the maternity hospital).’ While fostering was not an option then, the 1970s saw an increase in hospital care for such babies in the weeks after their births.”9

Only a third considered an average Down syndrome child to be a suitable candidate for euthanasia. Parents argued that the child’s degree of disability was the crucial factor in making this decision.

What counts as a severe disability, however, is subjective, even perhaps defying stereotypes or expectations. “One father, whose child scored exceptionally well on tests said, ‘Look at M, it's not a full life, there are a lot of problems.’” In contrast, of the parents of the 12 children who scored more than one standard deviation below the mean on the Ginzburg Progress Assessment Chart 1 (a measure of social competence) only one parent considered Down syndrome children “very severely handicapped.”10

We can see this divided opinion clearly in the following testimonials from the studies:

If I knew as I know now I'd have euthanized her. It's cruel for me and cruel for her. There's no life for me while she's here and none for her […] it's not a bit of good, the country's better off without them[…]a handicapped mind and a handicapped body, it's cruel. When a dog's injured you put it down.

I think it's wrong. Someone could have done it to [my daughter] but she's come on exceptionally well and we'd have missed a lot. It's the same as murder of an ordinary child - no question with any handicap, it's the taking of life. How can you tell at that age?' Asked whether she felt that, where the degree of handicap could be determined to be severe, euthanasia was acceptable she replied: 'I still wouldn't agree. It's like Hitler and a super race. There's a reason for us all.11

The study found a correlation between their opinion on euthanasia and their social class:


12
Parents were even divided on whether the doctor should make the decision of terminating the life or gestation of such a child. Some even proposed that a doctor should decide. Although I do not personally agree with this approach, each parent mentioned how challenging this decision would be, so I can understand the desire to transfer responsibility to a medical professional.

I therefore researched if there was such a precedent. I came across the case of “Re B (A Minor) (Wardship Medical Treatment),” which took place in 1981. The child was born with Down Syndrome and an intestinal blockage. She needed the obstruction removed if she were to survive more than a few months. If the operation were performed, her life expectancy might extend to 20-30 years.

Having decided that it would be kinder to allow her to die rather than live a short life as a physically and mentally disabled person, her parents refused to consent to the operation. The local authorities made the child a ward of the court, and, when a surgeon decided that the wishes of the parents should be respected, they sought an order authorizing another surgeon to undertake the procedure.

The appeal was allowed. The question for the court was whether it was in the child’s best interest that she should have the operation. Based on the evidence provided if the operation were performed, the child could expect a normal life span given her condition.13

Judge Templeman LJ’s remarks were as follows:

On behalf of the parents Mr. Gray has submitted very movingly […] that this is a case where nature has made its own arrangements to terminate a life which would not be fruitful and nature should not be interfered with. He has also submitted that in this kind of decision the views of responsible and caring parents, as these are, should be respected, and that their decision that it is better for the child to be allowed to die should be respected. Fortunately, or unfortunately, in this particular case the decision no longer lies with the parents or with the doctors but lies with the court. It is a decision which of course must be taken in the light of the evidence and views expressed by the parents and the doctors, but at the end of the day it devolves on this court in this particular instance to decide whether the life of this child is demonstrably going to be so awful that in effect the child must be condemned to die, or whether the life of this child is still so imponderable that it would be wrong for her to be condemned to die.

Judge Dunn LJ said:

“I have great sympathy for the parents in the agonizing decision to which they came. As they put it themselves, ‘God or nature has given the child a way out’. But the child now being a ward of court, although due weight must be given to the decision of the parents which everybody accepts was an entirely responsible one, doing what they considered was best, the fact of the matter is that this court now has to make the decision. It cannot hide behind the decision of the parents or the decision of the doctors; and in making the decision this court’s first and paramount consideration is the welfare of this unhappy little baby.”14

In this context, we should note the mention of the “unhappy” baby, a notion that some have challenged on the basis that many of those with Down syndrome live fulfilling lives. Upon reading this term, I could not help but reminisce about Aktion T4 and the Nazi “mercy killings.” The term “mercy killing” itself implies that by abridging their lives these medical professionals were doing a favor to these disabled individuals.

Indeed, their testimonies confirm that doctors believed that the patients were suffering or living an indecent existence unworthy of continuing.

In view of these readings and reflections I am still not convinced that there is a deep fundamental difference between the Aktion T4 euthanasia rationale and the rationale of expecting parents to decide whether they would terminate the gestation of a fetus with elevated risks of trisomy, specifically Down syndrome.

Please note that I do not wish here to discuss the legality or morality of abortion. I believe that women should have ownership over their bodies and the right not to pursue an unwanted pregnancy. In this reflection, I have discussed a specific situation: abortions of wanted pregnancies motivated by pre-natal screening indicating increased level of trisomy 21. I intentionally excluded abortions motivated by other forms of trisomy that ultimately condemn the fetus to miscarriage and stillbirth (which can also endanger the mother’s life) or imminent death following birth.

Choosing to terminate a pregnancy with increased level of trisomy 21 is a grey area. I do “feel” that it is a lesser evil to kill a fetus rather than to kill a living child or person. I was, however, unable to identify and articulate a fundamentally different rationale. In part, this difficulty remains because medicine cannot inform parents of the severity of the condition based simply on a NIPT.

Other limitations applied too. The concept of a “worthy” life seems heavily determined by socio-economic and cultural context (especially religious beliefs). This notion might be challenged further by technological and medical advancement allowing for increasing access to detailed pre-genetic screening.

In the end, I have come to see the multifaceted complexity of the comparison. While both Aktion T4 euthanasia and abortions specifically motivated by an increased level of trisomy 21 involve deciding what constitutes a “worthy life,” there is one important difference: during the time frame allowed for abortions it is not possible to predict the child’s health and viability, as the complications and severity of trisomy 21 vary greatly. On the other hand, Aktion T4 mercy killings were conducted on individuals aged 2-94 who were alive and “viable.” The ethical justification in each case, however, follows similar lines of reasoning. I cannot say I have found an answer, only more questions.

Melanie D’Mello was a 2023 FASPE Business Fellow. She is a management consultant at McKinsey & Company.

Notes

  1. The aim of this essay is not to challenge the murderous nature of the Aktion T4 nor is it to question the reasonableness of terminating pregnancies as such. My own experience has simply led me to explore why a great number of individuals, including myself, accept the idea of terminating pregnancies with elevated risks of trisomy.
  2. Horn, R. “NIPT and the concerns regarding ‘routinisation.’” Eur J Hum Genet 30, 637–638 (2022). https://doi.org/10.1038/s41431-022-01053-6
  3. van der Meij, K.R.M., Njio, A., Martin, L. et al. « Routinization of prenatal screening with the non-invasive prenatal test: pregnant women’s perspectives.” Eur J Hum Genet 30, 661–668 (2022). https://doi.org/10.1038/s41431-021-00940-8
  4. Garcia, E., Henneman, L., Gitsels-van der Wal, J.T. et al. « Non-invasive prenatal testing (NIPT) and pregnant women’s views on good motherhood: a qualitative study.” Eur J Hum Genet 30, 669–675 (2022). https://doi.org/10.1038/s41431-021-00945-3
  5. “Abortion and euthanasia of Down's syndrome children - the parents' view” Billie Shepperdson Medical Sociology Research Centre, University College, Swansea Journal of medical ethics, 1983, 9, 152-157
  6. “Abortion and euthanasia of Down's syndrome children - the parents' view” Billie Shepperdson Medical Sociology Research Centre, University College, Swansea Journal of medical ethics, 1983, 9, 152-157
  7. N.B., no distinction was made between active and passive euthanasia.
  8. Abortion and euthanasia of Down's syndrome children - the parents' view” Billie Shepperdson Medical Sociology Research Centre, University College, Swansea Journal of medical ethics, 1983, 9, 152-157
  9. Abortion and euthanasia of Down's syndrome children - the parents' view Billie Shepperdson Medical Sociology Research Centre, University College, Swansea Journal of medical ethics, 1983, 9, 152-157
  10. Abortion and euthanasia of Down's syndrome children - the parents' view Billie Shepperdson Medical Sociology Research Centre, University College, Swansea Journal of medical ethics, 1983, 9, 152-157
  11. Abortion and euthanasia of Down's syndrome children - the parents' view Billie Shepperdson Medical Sociology Research Centre, University College, Swansea Journal of medical ethics, 1983, 9, 152-157
  12. Abortion and euthanasia of Down's syndrome children - the parents' view Billie Shepperdson Medical Sociology Research Centre, University College, Swansea Journal of medical ethics, 1983, 9, 152-157
  13. Please note here that “normalcy” of lifespan is subjective and relative to a given time and place in history.
  14. n Re B (A Minor) (Wardship: Medical Treatment): CA 1981 [1990] 3 All ER 927, [1981] 1 WLR 1424