Free NIPT for every pregnancy in Germany: A lot less tolerance for parents who welcome children with Down syndrome

An interview with Cornelia Kaminski, German pro-life leader

A couple of months ago, the German Federal Joint Committee approved the financing of prenatal blood tests for detecting trisomies, meaning that as of 2022 the test is going to be fully covered by health insurance for every pregnancy. The German Down syndrome community, bioethicists, pro-lifers, and church leaders fear that it will lead to an increase in abortion, with Down Syndrome babies being the primary target. We talked to Cornelia Kaminski about this, and other issues concerning the anti-eugenic and pro-life movement in Germany. Kaminski is the federal chairwoman of the organization Aktion Lebensrecht für Alle (ALfA), the oldest and one of the most prominent of German pro-life organizations.

What is the legal frame for eugenic abortion in Germany, and what is the usual prenatal “screening pathway”?

The abortion law says that, in case the mother is expected to suffer either physical or psychological grievances if she carries the pregnancy to term, she is legally allowed to end the pregnancy at any point up until term. Whereas in former times this indication focused on a handicap of the baby, it now looks at the physical and mental health of the woman. The previous wording was struck down from the law, since many organizations and NGOs fighting for the rights of the people with disabilities were against it, for understandable reasons. Basically, the same practice has simply been given a different name.

Mothers are offered counselling in relation to the diagnosis of the child. This implies dealing with the medical, psychological and social aspects of the diagnosis. Another expert opinion is also required to confirm the diagnosis. Mothers must be handed some information on the diagnosis, and they must be informed about having the right to psychological and social counselling. A period needs to pass between the diagnosis and counselling. This period is at least three days. However, the woman does not have to contact the available counselling institutions, she is allowed to refuse. Also, there is no limit past which you are no longer allowed to abort the child. Abortions for medical reasons are not illegal in Germany, whereas abortions for social reasons are officially against the law but are not punishable if certain requirements are fulfilled.

The official figures on the abortion rate for children with Down syndrome following a pre-natal diagnosis is nine out of ten: every tenth child with Down syndrome survives the prenatal screening pathway in Germany. The usual screening pathway starts with a non-invasive screening blood test in week 9. Not everyone takes this test, because it has not been covered by insurance for all, and younger women usually do not take it because they are not “at risk”. In that case, the screening pathway starts at 12 weeks, when mothers are offered ultrasound, and if something comes up, they are offered an amniocentesis. In any case, amniocentesis is required for a definite diagnosis.

It is important to note that doctors used to be allowed to do as many ultrasounds and fetal imaging as they wanted to. However, as of January the 1st this year, that has been prohibited. Doctors are now only allowed to do an ultrasound if the ultrasound is conducted for diagnostic reasons. The so-called “baby TV” ultrasound has been made illegal. And another change is that midwives are no longer allowed to do the ultrasound. Doctors are now the only persons allowed to do that, and only for diagnostic reasons. This is a set-back for the pro-life community in Germany. Our own organization used to offer ultrasounds, just to show women what their child looks like, but that has now been prohibited.

What is now happening in Germany regarding the introduction of NIPT to the general insurance health care plan?

Two things are now happening in Germany, actually. NIPT is going to be offered to each and every single woman. All of them are going to be told “it’s just a simple blood test, nothing more than that”, and the test is going to be free of charge. And if the test turns out positive, then mothers will be offered the amniocentesis for a definite diagnosis.

Another thing. A couple of years ago, the High Court made a decision which ruled against a doctor in case of birthing a child with a disability. The verdict said that if a doctor failed to advise their patient to undergo specific tests like ultrasound, or did not recommend an amniocentesis, they have to pay indemnities in case a child was born with a disability. This is called “child as a damage” in the legal framework. The doctors are now held accountable. If they failed to warn their patient, they then have to pay for the child’s health care and everything that comes attached with a disability diagnosis. This is the reason why doctors are very eager to inform their patients about all the possibilities for prenatal diagnosis. It has become very difficult to refuse this.

What can we expect after this introduction and how are pro-life organizations, specifically Aktion Lebensrecht für Alle e.V., addressing this issue?

Well, what we can expect is that even less children with Down syndrome will be born. Second, there will be a lot less tolerance for parents who welcome children with Down syndrome, because they are now so “very easily avoidable”. I also fear that sometime soon, health insurance companies will begin to refuse insurance to children with Down syndrome, leaning on the fact that NIPT is now covered by insurance. They would just refuse to insure the child, because if the child was screened out, they would not have to pay for its health care. And since we know that children with Down syndrome tend to have a couple of health issues that other children don’t have as easily or as often, insurance companies will try to avoid that.

This is precisely what we are going to draw attention to, as a pro-life organization. The inclusion of NIPT into insurance is going to have grave consequences on equality and we are going to warn people about these consequences. Also, we will continue in raising awareness about the beauty of the existence of children with Down syndrome and the wonderful way they can live their life. We will insist on the fact that people with Down syndrome enrich our society. Frankly, we’ve lost the battle with NIPT and raising awareness is the only thing we can do now, really: to encourage women who receive the diagnosis not to abort their children. We also have a doctor we work with, and whom we recommend to women in this situation. He is a specialist in the field of Down syndrome and works with children with disabilities. We will continue providing information to the public, and we will also continue with our efforts in social work.

Photo: Demo für alle

Nonsense and Disability: In Response to Richard Dawkins on Disability Abortion

Richard Dawkins doesn’t learn from his mistakes. He just makes them broader.

In his infamous tweet from 2014, Dawkins claimed it was immoral to birth children with Down syndrome. And just the other day, he found it “plausible that, if a child has any kind of disability, then you probably would increase the amount of happiness in the world more by having another child instead.” He also claimed it would be “wise and sensible” to abort a child who is deaf or blind.

The concepts that Dawkins operates with are nothing new. They boil down to utilitarian ethics (of the “act utilitarianism” variety) coupled with an unreflected pro-choice mentality.

This advice to replace disabled children with abled ones for more happiness is derived according to something called “hedonistic calculus”. In utilitarian moral philosophy, good is equated with happiness. Happiness is commonly defined as pleasure or absence of pain. Therefore, according to this doctrine, one should act to increase the overall amount of happiness in the world and decrease the amount of suffering. In addition to “act utilitarianism”, there are far more nuanced and subtle theories out there under the umbrella of “rule utilitarianism”, but Dawkins’s remarks fall neatly in the cruder category of act utilitarianism. It is quite pleasurable to see this seemingly simple but immensely problematic doctrine fall on its head by the sheer force of Dawkins’s banality. Let us analyze it to see the fall in slow motion, shall we?

When judged by logic and the standards of their own ethical underpinnings, Dawkins’s remarks appear to be:

  1. ignorant;
  2. nonsensical;
  3. insufferable;
  4. ableist;
  5. eugenic and
  6. on the wrong side of history.

Let’s explain these features in detail.

1. Dawkins’s remarks are ignorant.

I will not go into the empirical statistics that provide irrefutable proof that most people with Down syndrome or other disabilities live full and satisfying lives, nor will I go into my own experience as a parent of a child with Down syndrome. I will stick to logic.

According to Dawkins, the world would be a happier place if people would kill as many future persons with a disability in utero as possible.

That means Dawkins sees disability as radically negative in terms of the probability of achieving higher levels of happiness through living which might make up for their congenital happiness deficit. Logic, however, dictates that disability must be contingent to happiness, since disability does not render people incapable of experiencing pleasure. However, being terminated does. Therefore, if you terminate fetuses because of their disability, you just prevent whole groups of people from experiencing life and experiencing happiness, thus disabling them to be happier than suffering, all due to your ignorant notion of their congenital disability as being literally insufferable.

Author’s child messing with the calculus

2. Dawkins’s remarks are nonsensical.

Unlike with ignorance, which refers to the lack of knowledge, nonsense refers to the failure to execute reason in a continually functional manner.

Like all humans, humans with disabilities do not pop into existence once they meet Dawkins’s criteria of viability, pain perception or extrauterine autonomy. The existence of a disability presupposes the existence of the body.

It makes no sense to advocate for the prevention of disabled humans’ existence using the argument of the existence of their body’s disability. They already exist.

Since we cannot know for sure that the intrauterine fetal body is currently suffering from the lack of pleasure or experiencing pain due to its disability only, the only valid solution within the act utilitarian ethical frame is to painlessly kill the body once Dawkins objectively determines that it is, in fact, about to start suffering. This is the only way he could yield the largest amount of happiness while minimizing suffering. Parents could have their otherwise wanted babies and enjoy parenthood up to a specific point. Milk apparently tastes spectacular, even to disabled babies. Life would be bright and pleasurable to all interested parties, up to a point. One would need to make sure about those facial expressions – are they caused by gases or some profound horrors of disability? Or is a toddler’s frustrated cry while attempting to crawl just typical or is it necessarily related to disability? Is a teenager’s angst exclusively related to their own perception of disability or is it just hormones? And so on. And only when positive these sufferings are exclusively related to disability, should Dawkins advise the good parents (or some postnatal abortionists) to strike.

This might become the grandest hedonistic calculus ever calculated. It could also be Dawkins’s highest intellectual achievement yet. Imagine the extent of the elements immaculately factored in. I’m sure he (along with those wise and sensible parents) will be on board with this brilliant opportunity for the greatest calculation of the happiness/suffering balance sheet in the whole of human history, save Aktion T4.

3. Dawkins’s remarks are insufferable.

Sadly, there appears to be a stumbling block on the path of seizing this bright opportunity. Dawkins’s remarks bring suffering into the world, without any redeemable quality, not even humor. Not even their freakishness would do – humanity has already suffered numerous forms of this argument throughout history. In other words, more fitting the genre: prior to their promising conclusion, these comments significantly reduce the amount of happiness in the world.

This is because Dawkins’s ignorant notions of disability as radical incapability to be happier than suffering, along with his sensible and wise advice to kill disabled fetuses in utero, actually inflict serious pain on certain people. This primarily refers to those who are disabled. But it also affects those whom these remarks implicitly call unwise and unsensible, i.e. foolish and stupid – the parents of people with disabilities. And since hedonistic calculus should always mind the maximum number of foreseeable consequences, I’ll go even further. Such logic probably adds to an effect of depressing people into abortion on the grounds of disability. Which brings us to the next feature.

4. Dawkins’s remarks are ableist.

Dawkins operates with disability as an incapacity to be happier than suffering, and perceives disability as a reducing factor in the global sum of happiness. Therefore, from Dawkins’s viewpoint of utilitarian ethics, disability is bad and having it is morally wrong.

But in order to position himself beyond criticism, he presents his calculated discrimination as speculative and he makes it about choosing against one future person in favor of another future person.

However, the discriminating is demonstrably and effectively performed in the very act of making this conclusion, regardless of the “speculative” nature of the subjects at hand. It is impossible to make this statement and not discriminate against any person with a disability, since the conclusion itself means such disability makes the existence of anyone having it less desirable than the existence of anyone without disability.

Section 15 of the UK’s Equality Act states that a person (A) discriminates against a disabled person (B) if A treats B unfavorably because of something arising in consequence of B’s disability, and A cannot show that the treatment is a proportionate means of achieving a legitimate aim.

It has been demonstrated that Dawkins treats persons with disabilities unfavorably in more than one way.

But can he show that this treatment is a proportionate means of achieving a legitimate aim? Let’s see: increasing the global sum of happiness can surely be seen as a legitimate aim, right?

However, the conclusion which he makes about the existence of people with disabilities cannot constitute a proportionate means, because it is impossible to advocate for the killing of the bodily present future persons with disabilities without:

a) consequently rendering all present persons with a disability better off dead,

b) rendering all future persons with disabilities who get to carry on with their living better off dead, and,

c) if successful, making their community smaller and smaller, thus seriously undermining their chances for acceptance, relations with others (different and alike), support, quality healthcare and political significance. A smaller community means a higher probability of not having people like you around to engage with or relate to, a higher probability of not receiving quality specialized care and healthcare, a higher probability of less social visibility, and a higher probability of more social and political injustice.

Therefore, he actually discriminates against people in more than two ways. And it’s serious.

5. Dawkins’s remarks are eugenic.

When Dawkins wrote his explanation for the 2014 tweet about Down syndrome, he claimed that his stance cannot be eugenic, since “Down Syndrome [sic] has almost zero heritability”.

Spartans used to throw the infants they perceived as flawed off a cliff, without particularly wanting to prevent them from having their own offspring in the future – they just wanted those less desirable out of the picture. That supposedly made them happy.

The idea that the world and the people in it would be better off if everyone were born without “defect” is the essential principle of eugenics (translated literally as well-born). The true differentia specifica lies in the ideological defining of a congenitally present set of traits that renders people less worthy of being given the chance to live or to breed similar people.

Which is exactly why even the UN operates with the term “liberal eugenics” in the context of disability discrimination in abortion, regardless of the heritability.

Since fetuses with disabilities are surely alive but their congenital incapacity to add happiness into the global sum makes them unworthy of life according to Dawkins’s calculus, it is obvious that Dawkins’s stance is explicitly and implicitly eugenic in the most horrific sense of the Lebensunwertes Leben ideology: he literally perceives their lives unworthy of living. This fits in quite neatly with the last feature of his stance:

6. Dawkins is on the wrong side of history.

As I write this, 80 US congresspersons are declaring discriminatory abortions wrong, urging the US Supreme Court to grant certiorari in the case of the 8th Circuit Court of Appeals blocking an Arkansas Bill that prohibits abortion on the grounds of Down syndrome. Venerable institutions like Jerome Lejeune Foundation USA have just submitted their Amicus Brief to the US Supreme Court in order to dismantle the legal potential for prenatal discrimination. Eleven US states have passed or are in the process of passing bills that prevent lethal discrimination in utero. In the UK, a challenge to the existing abortion legislation will be brought to the High Court of England and Wales by Heidi Crowter, who has Down syndrome, and Máire Lea-Wilson, who has a little boy with the same condition. The world is slowly coming out of the eugenic slumber. The UN’s Human Rights Council and Committee on the Rights of Persons with Disabilities are getting more vocal about the “liberal eugenics”, and anti-eugenics advocates and self-advocates are speaking out and the world is starting to pay attention. 

We the people from the Down syndrome community – self-advocates, parents and other justice advocates – have come a long way in this fight for dignity and recognition of equal worth and value of people with disabilities. Over the decades, we fought for de-institutionalization, for more systemic inclusion and for a less discriminatory healthcare. Today, we fight for prenatal justice for people with disabilities, and we will win. Because we don’t have calculuses. We have principles.

Write a letter for Down syndrome prenatal justice in Northern Ireland!

In March this year, the Severe Fetal Impairment Abortion (Amendment) Bill passed the Second Stage in the Northern Ireland Assembly. 

If enacted, this Bill will remove the current grounds that allow babies with disabilities including Down syndrome, cleft lip and club foot to be singled out for abortion and aborted up to birth.

The Northern Ireland Health Committee is now undertaking a consultation on the Bill and is seeking submissions from the public. 

The window for submitting your letters closes at 11:59pm on Friday, May 7. You can read more about the consultation here.

Saving Down syndrome urges everyone from the global Down syndrome community to share the truth about the equal value and worth of people with Down syndrome with the Northern Ireland Health Committee.

You can do that by sending an email at: [email protected]. You can write your own or use our text:

I support the Severe Fetal Impairment Abortion (Amendment) Bill in full. 

Any abortion law that singles out a minority group and leads to poor outcomes is in a breach of national and international conventions which promote equality.


your name here

Let’s take a step forward in bringing about global prenatal justice!

An interview with Uuganaa Ramsay

Uuganaa Ramsay

“Addressing both hate speech and misinformation regarding Down syndrome

Uuganaa Ramsay is the founder of Mongol Identity, a non-profit organization whose mission is to bring about a greater understanding of the word Mongol in order to end the misuse of the term when referring to people with Down syndrome. 

Uuganaa was born and raised in Mongolia and now lives in Britain. Her mission to end the misuse of the term comes from a unique angle, which results in a twofold motivation. Uuganaa started writing and campaigning in 2010, following the death of her son Billy – who had Down syndrome. In 2014, Uuganaa published Mongol. Mongol is an award-winning memoir of her life as a Mongolian, juxtaposed with the story of Billy’s short life.

In February this year, following a campaign led by Mongol Identity, Oxford University Press announced that the words mongol, mongoloid and mongolism are to be removed from the Oxford Advanced Learner’s Dictionary. We speak with Uuganaa about her advocacy and the unique private and cultural background that inspired it.

Uuganaa’s son Billy, private archive

How did the word mongol become a slur word for Down syndrome, and what were the key points in the history of the misuse?

As you will know, the word ‘Mongol/mongol’ has multiple associations. In addition to describing a person from Mongolia, it is also used as a derogatory term for a person with Down syndrome and, more generally, as an insult referring to someone stupid. The associations have their roots in the 19th Century pseudo-sciences of ethnic classification and phrenology, when John Langdon Down classified people with Down syndrome as ‘Mongolian Idiots’. His opinion was that they shared some of the facial characteristics of the ‘Mongoloid’, the racist classification used in the West to describe people from Mongolia, China and Japan.

In the 1960s, geneticists campaigned to have the ‘Mongolian Idiot’ (and associated variations) replaced by ‘Down syndrome’, reflecting a growing concern at the racism at the root of the term. By 1965, the World Health Organisation’s classification of diseases dropped any links between ‘Mongol’ and ‘Down syndrome’ and it was assumed that this association would fade over time.

What is the current situation, globally, regarding the use of this word as a slur for people with Down syndrome?

The associations between Mongol, Down syndrome and stupidity still persist. As recently as October 2020, Formula 1 driver Max Verstappen caused uproar when he called a rival a ‘Mongol’. The social media response which followed showed that many had no idea why this use of the word Mongol was offensive, and saw it merely as interchangeable for ‘idiot’. There was little recognition that using the term as an insult is both deeply racist and discriminatory. When Max Verstappen made his comments, we found a lot of people on social media defended his use of the word by saying ‘Mongol is in the dictionary and it means someone who is stupid or someone who has Down syndrome.’

Mongol Identity SCIO was established to challenge and change the pejorative uses of ‘Mongol’. Through education, it seeks to promote an understanding of Mongol culture and to address the racism and discrimination that underpins the use of ‘Mongol’ as an insult.

One approach the charity has taken is to engage with publishers to help improve the definitions of Mongol provided in dictionaries. Some have responded to the challenge with relish. One example is that of Oxford University Press, which has removed references to pejorative uses of Mongol from its Advanced Learners’ Dictionary.

“Having reviewed the evidence for the words ‘mongol’, ‘mongoloid’, and ‘mongolism’, we have decided to remove these terms from the Oxford Advanced Learner’s Dictionary. The terms are no longer widely used and therefore not helpful to current learners of English.”

You are forced to thread a thin line between Mongolian national dignity and anti-discrimination of people with Down syndrome, connecting both fronts into one. Someone might argue that Mongols should not be ashamed of this slur, as it connects them with a community of people who deserve dignity and respect. On the other hand, one might also argue that the people with Down syndrome should not mind being called “mongols”, as it associates them with a proud nation. What would you say to both? 

We need to understand we are addressing hate speech as well as misinformation regarding the diagnosis of Down syndrome. Both Mongols and people with Down syndrome are affected by this misjudgment and insult. It’s not about being compared to one another. It could have been any condition or any ethnicity. The problem source is the racist theory behind it showing superiority over one human being to another.   

What are your plans for the future in regards to putting an end to the misuse of the word Mongol?    

Mongol Identity SCIO started working with international dictionaries to improve the definition. As mentioned before, the approach is educational. We are here to learn from one another and with our own Down syndrome community, we can work together on normalizing the word ‘Mongol’ and educate others. We will continue to monitor films and media, medical terminologies, and the press. The other main work is to raise awareness on the Mongol world through arts, education and social awareness showing people what the authentic meaning refers to. The Mongol culture is rich and there’s so much that the world can enjoy finding out more about these people and their culture. There are over 10 million Mongols around the world living and working among us.

Your book Mongol presents your experiences from a number of realms and angles. What was the unifying driving force that compelled you to write it?

I wrote my memoir in memory of my son Billy and for my other children as they are growing up in Britain which is very different from my Mongolian childhood. I felt it was important to share my story with the world because so many of us go through heartbreaks and happy times yet very few of us share our story in an honest way. There’s a lot of stigma attached to diagnosis and labels and instead of living our life and enjoy being who we are, we end up trying to prove our existence battling with inequalities and misrepresentation.

In your book, you describe having had some obstacles in explaining your son’s  diagnosis to your family and friends in Mongolia. What are today’s challenges for our community in Mongolian society? 

As we know any diagnosis brings upset and anxiety. The challenges are the same as many countries. Mostly parents are the ones who make things happen and ask for change in the system. The society has become much more accepting since 2008 after the Mongolian Down Syndrome association was formed. Prenatal diagnostic testing is not as widely used due to the geographic stretch. Some Mongols are nomads and they live in rural areas where they are miles away from the nearest medical facilities. Because of this there are consequences. Good and bad. The good – as many of us know over 90% of babies diagnosed with DS prebirth are aborted in the UK. So there is less discrimination in Mongolia. The bad – families can be too far away from medical help when children are born with congenital health issues.  

Is there any negative term in Mongolian for people with Down syndrome? 

None specifically for people with Down syndrome.  

What do you perceive as the main challenge for the global Down syndrome community? 

I work in education and employment. Our challenge is to have an educational system that is more than a creche and to build integrated employability programs involving employers and independent living.   

An interview with Dr Calum MacKellar – Part 2

“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.

[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

Image by The Christian Institute

An interview with Dr Calum MacKellar – Part 1

“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)

Image by The Christian Institute