International Declaration Against Legalisation of Human Genetic Modification

[DECLARATION] International Declaration Against Legalisation of Human Genetic Modification

See the website of the International Coalition to Stop Designer Babies 

The undersigned organisations and individuals support the existing strong international consensus against genetic modification of human beings (HGM*). We wish to express our great concern about and opposition to those scientific academies and others presently seeking to legalise HGM. HGM is medically unnecessary. Pursuing it is an act of extreme scientific irresponsibility, likely to result in enormously harmful consequences for individuals and for global society as a whole.

Human cloning and HGM were banned in international human rights treaties and in many countries in the 1990s, primarily because of the terrible history of eugenics. We support this deeply-felt and principled international ethical consensus. New technical abilities to conduct HGM do not change that consensus. We believe:

  • Designing children’s genes runs counter to accepted basic visions of diversity and the inclusion and equality of all vulnerable individuals and minority groups. Rather than competitively genetically ‘enhancing’ children, we want to encourage a world that celebrates and accepts all individuals and groups of people and that does not rely on oppressive and biological determinist prejudices about what constitutes a ‘better’ human being. Allowing HGM would exacerbate existing social inequalities. It would be an act of scientific irresponsibility and, in a time of rising neo-fascism, of political irresponsibility as well.
  • Like human cloning, HGM is referred to in international declarations and treaties as contrary to human dignity, because it reduces human beings, to the status of designed and optimised consumer objects.
  • There are a range of robust alternative methods for avoiding genetic conditions, so the only advantage of HGM would be for ensuring 100% genetic parenthood of the child. It can never be ethical to submit a child to the severe health risks of genetic modification for this purpose.
  • We are also concerned about the exploitation of and health risks to those sourced for eggs for research to make HGM possible.

We call upon the UN to create an international convention to permanently ban HGM and human cloning. For the sake of our children and of our common humanity we must not cross this ethical line.

* We use the term ‘human genetic modification’ (HGM) rather than ‘genome editing’. Scientists seeking to promote HGM introduced the later term to allay public concerns about creating designer children. We use the term ‘human genetic modification’ to refer to genetic modification of human eggs, sperm, or embryos to create a person who is genetically engineered in all cells of their body and will pass on the genetic changes to their offspring. Genetic engineering of cells for purposes of treating a particular disease as, for example, skin, liver, or lung cells, which we do not oppose, is usually referred to as somatic gene therapy.

Contact us: info at coalitionstopdesignerbabies.net

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[VIDEOS] Why Your Movement Should Oppose Designer Babies – a mini conference

[VIDEOS] Why Your Movement Should Oppose Designer Babies – a mini conference

How do social movements’ politics connect to the campaign against designer babies?

On March 9th 2022, Stop Designer Babies, Gen-ethisches Netzwerk (Germany), Alliance for Humane Biotechnology (USA) and GeneEthics (Australia) organised a very successful mini conference with Vandana Shiva, Sarah Boon, Donna Dickenson, Tina Stevens, Claire Robinson, Pete Shanks, Bob Phelps and others. See here

Full event:

Section 1: Basics
– Introduction on CRISPR and Heritable Human Germ line editing: Shrese (SDB)
Historical and contemporary perspective on Techno-eugenics: Tina Stevens (AHB)

Section 2: social movements against HHGE/eugenics
– Feminist perspective: Donna Dickenson
– Decolonial perspective: Vandana Shiva (Navdanya)
– Disability rights perspective: Sarah Boon (autisticallysarah.com)
– Environmental perspective: Claire Robinson (GMWatch)

Section 3: International perspective
– Critique of the international summits process: Pete Shanks (Centre for Genetics and Society)
– Germany: Taleo Stüwe (Gen-ethisches Netzwerk)
– France: Jérôme Santolini (Sciences citoyennes)
– Australia: Bob Phelps (GeneEthics)

CRISPR: “precise scissors” or “chainsaw”?

CRISPR: “precise scissors” or “chainsaw”?

© EMBL / P. Riedinger

Scientists do like their metaphors. Like all metaphors they can be criticised for being misleading (see below), but when they affect issues of human and ecological safety, we must be extra careful. In biology, one of the most famous is that of the ‘genetic programme’, which influenced both the directions that research in life sciences took and our perception of the living world. Another is the description of the DNA as the “Book of life”. This linguistic metaphor has been heavily spun recently with the introduction of the CRISPR-Cas9 technology to the toolbox of the biotech industry. CRISPR, we are told, is a tool that would allow the ’editing’ of the genome, it is a ’molecular scissors’ allowing scientists to ‘cut and paste’ etc. All of these metaphors constructs an image of precision and infallibility. The ongoing push for the deregulation of CRISPR-like methods in the agro-industry (see the work of the Corporate Europe Observatory on this) mobilises this supposed infallibility to argue that the genetic manipulation of crops made through CRISPR would only precisely copy what ‘nature’ is doing, and therefore would not warrant any regulation or safety assessment of any sort. This is the argument of ‘indistinguishability’ (see here or here for a critique of this).

One problem with all of this is that CRISPR is not so precise. A 2020 list compiled by Dr Michael Antoniou lists the many studies showing the unintended mutational outcomes (changes made to the DNA molecule) produced by ‘gene editing’ in medical research. In short, when CRISPR is used to modify a genome, it is not unusual that this provokes unintended damage. Until now, the focus was mostly on what are called ‘off-target effects’, that is to say unintended changes can happen in areas different from the one that was targeted.

However, it has recently been acknowledged that there are many unexpected ‘on-target effects’, another major blow to the ‘scissors’ narrative. Not only does the CRISPR system cut at unintended places, but sometimes it does not even cut properly at the intended place… This has been reported for example this year in an April’s study by scientists from the Francis Crick Institute in the UK, which was particularly significant for us, since it dealt with the use of CRISPR in human embryos. An extensive review of these potential on-target effects was produced by GeneWatch UK this September. Their report focuses on the fact that the damage is done not so much by the cutting of the DNA, but that the rejoining (or repair) of the DNA by cellular enzymes after the cut is not properly ‘controlled’. According to the report, “such effects fundamentally challenge the notion of indistinguishability”.

To add to this, in April 2021 as well, a study published in Nature Genetics showed that CRISPR can cause another type of on-target effect that had not been detected before, chromothripsis, which refers to major chromosomal damage of the type that is known to be involved in some cancers. Reporting on this, GMWatch emphasized some interesting facts. One is that the tone of the paper, quite alarmist on a pre-print platform, was turned down a notch at the time of publication. The other is the probable impact on the shares of biotech companies based on CRISPR technologies. As one proponent of these technologies sheepishly reacted in the news section of Nature Biotechnology: “We as a community understand that we’re one serious adverse event away from a clinical hold on everyone”. But, he suggests, all is under control, for the perfect solution for this, the one that technocracy has been given us since its inception, is that: “We will have to mitigate [the unforeseen problems] retrospectively, in reactive mode.”

What is the significance of all this? To quote the GeneWatch report again: “Knowledge of DNA repair pathways is still an evolving field, leaving knowledge gaps and uncertainties around the extent and type of genetic damage being caused, and around any notion of predictability and thus subsequent safety of genome editing applications”. Another take-home message of the report is that scientists will tend to only find what they set out to look for, ignoring the limits of their own detection techniques (e.g. looking only at the site of cut will not allow the detection of off-target effects, looking at point mutations will not allow the detection of chromosomal rearrangements etc.). The result is a kind of cat-and-mouse game between claims of “precision and safety” and the constant discovery of new off- and on-target effects. What a surprise, in October it was shown, again!, that CRISPR gene editing causes whole chromosome loss…

Although Stop Designer Babies’ focus is primarily on the ethical, social and political consequences of allowing human genetic engineering, it is important to take these safety issues seriously. Thirty years of experience with crop and animal genetic engineering has taught us that genetic engineering is rarely ‘precise’ and these ‘unexpected’ effects can have very serious consequences. We simply cannot afford that with human beings, so we need a higher standard of safety there, a precautionary standard. This is particularly clear since there is no medical need to perform such manipulations of the human genome: all medical issues can be dealt with through other technologies that are now widely used and robust. It seems, frankly, crazy, to subject children to such dangerous technologies when simple alternatives are available.

Yet the scientific establishment bodies that keep holding ‘summits’ and proposing paths to clinical trials, rather than asking whether such trials are ever needed, keep pushing ahead regardless. Thus, it falls to critical scientists, doctors and small groups like Stop Designer Babies to speak up for common sense and rationality in the face of scientists’ irrational enthusiasms.

GM ‘designer babies’: breakthrough or nightmare?

GM ‘designer babies’: breakthrough or nightmare?

Originally published in Red Pepper

In late 2018, when He Jiankui announced that he had created the world’s first genetically modified (GM) babies, part of the worldwide outrage was motivated by the hope that we would not have to deal with this issue for at least ten years. Since then, eugenics has reared its ugly head in the experience of minority ethnic and disabled people during the pandemic, and with the revelations that women were being sterilised without their knowledge in one of Donald Trump’s ICE detention centres in Georgia. In Britain, we had the prime minister’s then chief adviser, Dominic Cummings, trying to appoint outspoken eugenicists to advisory roles in number 10 and to head up his pet Advanced Research and Invention Agency.

Eugenics is here and now; in fact, it never went away. That is why nearly all industrialised countries put in place legal bans on the genetic engineering of human beings in the 1990s or earlier. But despite that, scientific establishment bodies, which cannot countenance the idea of banning any type of research or technological application, have been quietly moving forward with plans for clinical trials ever since He Jiankui’s announcement. They are meeting in London in March 2022 to push these plans. Stop Designer Babies will be there to oppose them.

Readers of Red Pepper will probably not need explanations as to why a genetically stratified society, created through consumerism and free market forces, with the rich being able to give their children extra advantages over ordinary children, should be resisted. We should not let social oppressions like racism, disability oppression, sexism, etc determine which types of children get born, through parents’ reproductive choices. Neoliberal eugenics can and already does exist without the state forcing anybody to do anything. Red Pepper readers will also understand why turning children into just another designed and optimised consumer commodity fundamentally undermines human rights.

However, the left’s basic humanitarianism and belief in progress through technology means it is sometimes insufficiently critical about scientists’ misleading claims that genetic engineering is necessary to prevent genetic diseases. Of course, such claims ignore disabled people’s arguments that disability is primarily caused not by their impairments, but by social oppression, including lack of accessibility and support.

Crossing the line

This is a very complex and difficult issue, and of course, women must have the basic right to choose. But they have little free choice in a society which does not provide adequate support for parents of disabled children. That is an ongoing struggle, and for the present, we must allow women, (who may for example already have a child with a genetic impairment), to make their choices.

But there already exist a range of options, including adoption, gamete donation, prenatal and pre-implantation genetic testing to allow families to avoid genetic disease. Genetic engineering is simply unnecessary and has big safety concerns. The exceptions to that, the cases where only genetic engineering can do the job (were it ever to be proved safe, which will be extremely difficult) are vanishingly rare. For the sake of a handful of people, who may not be able to have children that are 100% genetically related to them, are we prepared to cross the line into a world in which human evolution is steered by the forces of oppression and capitalism?

The truth is that the real market for genetically modified babies will be for ‘designer babies’, enhanced to compete better with other children, to satisfy parents’ whims, or to avoid (and thereby perpetuate) social oppressions. Experience with pharmaceuticals and surgery is that, where there is a market (and many surveys have shown that there will be a market for genetic enhancement) the line between medical treatment and cosmetic enhancement cannot be held.

And as we have seen with commercial surrogacy, national regulatory systems and bans are easily circumvented by industries which set up companies in countries where there is a pool of poor women, and no regulation. That is why Stop Designer Babies is campaigning for a global ban on human genetic engineering. If we want to avoid a future of free market eugenics, that is the only solution.

Stop Designer Babies is holding an online event to discuss these issues on 8 December 2021.

Dr David King is a former molecular biologist, who has been writing and campaigning on issues raised by genetic engineering and other technologies for the past 30 years. He is one of the founders of Stop Designer Babies and was a founder of the UK campaign against GM food.

The ‘bad apple’ and the frog

The ‘bad apple’ and the frog

Stephen Roudschtein Blog posts are personal opinions and do not necessarily reflect Stop Designer Babies’ position.

The key framing of the story of the announcement of the birth of the first GM babies, was the classic ‘rogue scientist’ trope, beloved of cartoon writers. Much of He Jiankui’s behaviour, including secrecy and forging ethical review documents undoubtedly fits that pattern. But if you scratch the surface, it soon becomes clear that there is much more than one bad apple that is rotten in science. By condemning him, the scientific institutions try to make themselves look responsible. In fact, they prepared the ground for him, in many ways and must take the blame for that. As with the Catholic church, the ‘bad apples’ commit crimes because they have the confidence that comes from being part of institutions with vast social power and prestige.

In essence, from the point of view of the scientific institutions, He Jiankui did what those characters in comedies do, who say, “Oh my God! Did I just say that out loud!?” As a result, the world has woken up to the fact that consumer eugenics is not some science-fiction scenario, it’s real, here and now.

Engineering consent

The strategy of the scientific institutions was meant to be a replay of their now well-established technocratic method of engineering public ‘consent’ for each new technology they want to introduce.   In the usual run of things, first some new scientific or technological development happens. Then bioethicists produce reports saying that although the new technology challenges existing morality, cultural norms, and might have harmful social consequences etc., it should be allowed to go ahead in the name of scientific progress and consumer choice.

Third, a well-funded and thoroughly mendacious PR campaign is launched around a ‘public consultation’ process, in which the questions asked are designed to get the answer desired. In the course of this ‘public debate’, families with medical problems are pushed in front of the media. This frames the issue as Scientific Progress and Medical Benevolence versus (preferably religious/pro-life) irrational and uncaring naysayers.  Finally, in a few brief hours of debate, parliaments pass the desired legislation.

Frogs, potatoes and elephants

Normally, the procedure follows the story of the man who boils a frog (i.e. you and me) alive: why doesn’t the frog jump out of the pan? Because it is being heated so gradually that it never notices what is going on, it can never find the moment to jump.

In the case of human genetic engineering the scientific institutions had to be careful.  This issue has, for many years, been regarded as the most sensitive of all bioethical issues, the hottest of hot potatoes. That is why governments in nearly every industrialised country have actually banned it. It is, to say the least, highly unusual for governments to rule out certain areas of technological development before they are even feasible – there would have to be very good reasons for that.

The reason here, the enormous elephant in the room that geneticists and bioethicists don’t like to talk about, is the history of eugenics in the 20th century, the atrocities committed by geneticists and others in the name of ‘improving the human race’. The technocrats knew that, if they were not careful, they might come unstuck in the same way that they did over GM food in Europe, in the late 1990s. They would have to boil us very slowly.

Accordingly, this time the scientific establishment began more carefully, with an ‘international summit’ of scientists in late 2015 in Washington DC. Of course, no representatives of civil society were asked to speak. The final statement of that summit, which was supposed to be the international consensus about how to proceed in this area, acknowledged the great sensitivity and importance of this issue. So, we were reassured, nothing would move ahead until a process of creating a ‘broad societal consensus’ had been gone through.

Science out of control

Unfortunately, no-one knew what a process for creating broad societal consensus would look like, and no-one bothered to think about it much. Instead, the technocratic machinery moved into gear, the accelerator was pressed, it was business as usual. Little more than a year after the 2015 summit, the US National Academy of Science (NAS) produced a report saying that human genetic modification, for the purposes of preventing genetic disease would be ethically acceptable. In 2018, a scientist-dominated panel convened by the UK-based Nuffield Council on Bioethics, took the further unprecedented step, so far only taken by transhumanists and other self-declared eugenicists. In its wisdom, it decided that even genetically-‘enhanced’ designer babies could be ethically acceptable.

Thus, in less than three years, in a period when more and more evidence accrued that the new technology was not ready, the scientific institutions moved from tentative reassurance to full steam ahead. In ethically justifying what he did, He Jiankui said that he took the NAS report as a green light to proceed. Those Western scientists who condemn him and pretend to be so much more responsible, trained him and showed him the way.

Which bit of NO! did you not understand?

What this sad story shows is that even our august and sober scientific and ethical institutions cannot restrain their enthusiasm for technological conquest. They could not, even when they really needed to, wait just a little longer. For the truth is that, if you push almost any scientist hard enough, they will admit that they simply do not accept democratic control of science and technology. The very concept just doesn’t make sense in their technocratic worldview, in which they see themselves bravely striding forward to save humanity through technology. They are the good guys after all, aren’t they? How could anybody argue with ‘progress through technology’? We have heard enough of this from the Silicon Valley superheroes and their techno-fixes for everything to recognise it by now.

This is the scientific credo, no matter how well they can mouth the currently required phrase ‘Responsible Research and Innovation’.  Most scientists simply reject the idea that people have any right to say NO! To what they’re doing. Even though we pay their salaries, fund their research and have set up the nice universities where they work. No matter how little medical benefit there may be, no matter how great the risks to society, they simply MUST push ahead.  Unfortunately, the bit of NO they don’t understand is all of it.

Accordingly, in the neoliberal era, in the age of ‘Move Fast and Break Things’ (i.e. people, communities, whole societies), bioethics has become largely a matter of showing why accepted moral principles and social norms are no longer relevant. All must bow down to the Gods of profit, consumer autonomy and ‘progress through technology’. Even the demonstrated social catastrophe of eugenics cannot be allowed to get in the way.  He Jiankui lifted the veil on all this and showed us what technocracy looks like.

Now let’s see what democracy looks like

The Hong Kong summit in November 2018 was intended to consolidate the shift from ‘waiting for societal consensus’ to ‘paying attention to social concerns’ (!). Although they had already turned up the heat on the frog too fast, they were certainly not going to listen to civil society calls for a moratorium. They would probably have got away with it, had it not been for He Jiankui, who turned the heat under the frog right up to boiling point. Now it’s jumping; what happens next is up to you. Let’s see what democracy looks like.