“Equality in value and worth is the foundation of civilisation”

Part 2

< Part 1 of the interview

In most of the countries where abortion is legal up to a specific gestational age, there are exceptions in cases of “serious congenital or genetic disorders” that allow abortions up to term. Historically speaking, can you provide any insight into the argumentation for such legislation - what arguments, if any, were provided and if there were any, where do they stem from?

In the UK, it was only in 1990 with the Human Embryology and Human Fertilisation Act that abortion law allowed prenatal disabled children to be aborted up until birth. This means that physicians can even cite disabilities such as cleft palate or a malformed hand as ‘serious abnormalities’ deserving a late abortion.^[1] This came about through a kind of last-minute haggling and trade-off in Parliament in 1990 in exchange of other provisions that were being proposed. It was not really thought through.

What do you think is the reason for numerous and world-wide negative experiences people have with medical practitioners advising or pressuring them to terminate in the case of an indicated or diagnosed Down syndrome pregnancy?

I believe a number of medical practitioners are not sufficiently trained to give impartial advice. They should also remember that they are experts in medicine but that the notion of a ‘value of life’ is beyond the realm of medicine. In addition, many may not have sufficiently thought through their own value system. They should be challenged about this and whether they actually believe that all persons are absolutely equal in value and worth. Finally, they should learn to see all persons as having immeasurable value and not just see disorders, problems and dysfunctions.

Do you discern any promising lane of reaching the universal illegality of eugenic choice from the very start of a biologically human life with congenital or genetic untypicality?

I believe we have to remind society, again and again, that everybody is absolutely equal in value and worth, no matter how young, old, abled or disabled they are. That is the foundation of civilization. Without the concept of equality in value and worth of all individuals, civilised society would eventually collapse.  

Recent PR articles and studies indicate that there are some developments regarding the setting up of the algorithms and the methodology of prenatal testing for Autism Spectrum Disorder. What would be your thoughts and insights on that?

If the prenatal testing is performed in order to better welcome the prenatal child into society and for the benefit of this child, then I would support the procedure. If, on the other hand, the prenatal testing is undertaken with the aim of aborting any child with a disorder, I would find this barbaric and eugenic.

Is there any state-regulated framework regarding data privacy concerns that may be raised concerning cfDNA and NIPT, accounting for the vast pool of genetic information obtained?

I am not quite sure if any such framework exists. The use of biomedical data is regulated at the Council of Europe level. Whether it is sufficiently regulated to address all possible concerns is another matter.

Regarding Heidi Crowter’s case in the UK: what would be the consequences of a ruling against Heidi’s legal challenge? And if she wins, what consequences for the prenatal screening apparatus and the countries with similar laws do you expect?

I believe that Heidi Crowter’s case is extremely important. If she loses, the message given to society would be that people like her should not exist. That there is such a thing as a ‘life unworthy of life’ which was one of the main Nazi slogans during the Third Reich. It would also mean that every person in society would be able to be categorised on a scale of value and worth.

If Heidi Crowter wins, on the other hand, it would mean that any eugenic procedure is unacceptable because all persons, and all possible future persons, are completely equal in value and worth. And if all future persons are equal, any (eugenic) selective procedure becomes meaningless.

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[1] Surgical Interventions for Congenital Anomalies, Farmer D, Sitkin N, Lofberg K, Donkor P, Ozgediz D. Essential Surgery: Disease Control Priorities, Third Edition (Volume 1). Washington (DC): The International Bank for Reconstruction and Development / The World Bank; 2015 Apr. Chapter 8

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“Equality in value and worth is the foundation of civilisation”

Part 1

Dr Calum MacKellar is one of the leading contemporary bioethicists. He is the Director of Research of Scottish Council of Human Bioethics, a Fellow of the Center for Bioethics & Human Dignity at Trinity International University, Chicago, USA, and a Visiting Lecturer and Visiting Professor in Bioethics at St Mary’s University in London. He was also a senior civil servant with the Bioethics Division of the Council of Europe in Strasbourg, France. Dr MacKellar is the author of several books, including The Image of God, Personhood and The Embryo and Cyborg Mind; he also co-edited The Ethics of New Eugenics. His latest book is entitled Christianity and the New Eugenics: Should We Choose to Have Only Healthy or Enhanced Children?. Dr MacKellar was kind enough to answer some questions for Saving Down syndrome.

We are speaking on the grounds of Down syndrome. What would be your take on the genetic categorisation of people with Down syndrome in comparison to the rest of the population? As it is a stable karyotypic constitution, would you call Down syndrome a variant of the human genome, a departure from standard or simply a disorder? In genetic terms, is there a scientific reason for hierarchy?

Personally, I would simply consider Down syndrome as a variant of the human genome. We all have different genomes (apart from identical twins) and we are all different biologically. It is very difficult to define what is ‘normal’. Is anyone really normal?

From a purely scientific perspective there is no reason for any hierarchy in disorders. But then again, science cannot give any real value and worth to anyone. From a purely scientific perspective we are all just piles of worthless biological cells. 

The previous question is closely connected to the concept of normalcy. People with Down syndrome are in the jeopardy of being seen as “less human”. What is your take on that?

In the same way as there is no definition of what is a ‘normal human being’, there is no definition of the ‘human’. Even the Council of Europe has not defined what ‘human’ means though the European Convention on Human Rights mentions the ‘human’.

What matters is whether an individual is a person. And individuals with Down syndrome are certainly persons like any other person.

What would be your definition of eugenics?

The definition of eugenics that the Scottish Council on Human Bioethics (SCHB) uses in its book on the topic (The Ethics of the New Eugenics, Berghahn Books, 2014) is: “Strategies and decisions aims at affecting, in a manner which is considered to be positive, the genetic heritage of a child, a community or humanity in general”.

The SCHB is completely opposed to eugenics since it undermines the concept of equality in value and worth of all human beings in society.

There is a sharp discrepancy between the bioethical reasoning on selective abortions and the situation in the field. How would you explain the fact that such practices have been normalized in the population and even unofficially encouraged by the system, in spite of being almost self-evidently eugenic?

Abortion has been normalised in society because of a number of factors, including: (1) The fact that many people begin to consider something as normal and acceptable when it is legalised by their parliament; (2) The media are often really encouraging society to see abortion as normal and acceptable; (3) The general public is often not that well informed about what is really going on relating to abortion (because the media have their own agenda).

For example, the BBC (which is financed by the UK government) have now clearly stated that they will only talk about Pro-choice and Anti-choice individuals (and never Pro-life and Anti-life).

The Down syndrome community is in obvious jeopardy of eradication, yet many parents and pertinent institutions do not see the availability of eugenic “choice” as an issue. What would you say to them?

There is a lot of misunderstanding in society about eugenics. In fact, the word may not even be used. Instead, an expression such as ‘Therapeutic Selection’ may be employed. It sounds a lot more positive and medical. Most individuals who have an abortion in the UK, especially since counselling is not obligatory, have no real understanding of all the ethical challenges related to abortion.

(To be continued)

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