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| Imaginary yes, but the mind boggles at what undisciplined researchers might produce |
It is my judgment in these things that when you see something that is technically sweet, you go ahead and do it and you argue about what to do about it only after you have had your technical success. That is the way it was with the atomic bomb.
While world powers are trying to limit the spread or even to roll back the deployment of nuclear weapons because of horrifying prospect of acts of mutual destruction, and the spread of cell- and gene-mutating radiation, the gene-editing world is eager to press on with its research in order to bolster reputations, please narcissistic parents, and, of course, make healthy profits by offering attractive promises to those who barely understand what is being done to their offspring.
Alan Jacobs has written:
Those who look forward to a future of increasing technological manipulation of human beings, and of other biological organisms, always imagine themselves as the Controllers, not the controlled; they always identify with the position of power. And so they forget evolutionary history, they forget biology, they forget the disasters that can come from following the Oppenheimer Principle — they forget everything that might serve to remind them of constraints on the power they have … or fondly imagine they have.
Antonio Regalado, the senior editor for biomedicine for MIT Technology Review, who attended 2018's Second International Summit on Human Gene Editing in Hong Kong, tweeted the following:
- holy cow! Harvard Medical School dean George Daley is making the case, big time, and eloquently, FOR editing embryos...
- he is says technically we are *ready* for RESPONSIBLE clinic use.
- he’s basically saying, stop debating ethics, start talking about the pathway forward.
- they are talking about these babies like they are lab rats.
Also from 2018, Professor John Rasko used Australia's Boyer Lectures to explore "Life Re-engineered", covering the power and dangers of biotechnology, gene and cell therapy, as scientists race each other to cure disease, prolong life and change the course of human evolution.
Rasko is president of the International Society for Cell & Gene Therapy, head of the department of cell & molecular therapies at the Royal Prince Alfred Hospital and professor of medicine at the University of Sydney’s Centenary Institute. He said in the first lecture:
Nowadays, [...] we know, for instance, that some traits — and some diseases — are directly linked to specific genes. But these are the exceptions, not the rule. Most traits and most genetic diseases seem to involve multiple genes and multiple environmental factors like diet, stress, alcohol consumption and so on. Here nature and nurture combine in dizzyingly complex ways which we're only just beginning to understand.
He uses Down Syndrome to make a point about what might be called "newgenics":
Down Syndrome has no cure, but we can easily screen for it while the embryo is still in the first trimester. And an increasing number of women are having prenatal tests for this and other disorders. If the result is positive for Down Syndrome you're faced with a very difficult decision. Will you or won't you continue the pregnancy? In Europe and the US, about 85% of parents decide on termination.[5] Across Australia, the rates are similar.[6]
The birth of the first IVF baby, Louise Brown, in 1978 provoked a media frenzy. In comparison, a little girl named Aurea born by IVF in May 2020 went almost unnoticed. Yet she represents a significant first in assisted reproduction too, for the embryo from which she grew was selected from others based on polygenic screening before implantation, to optimise her health prospects.
For both scientific and ethical reasons, this new type of genetic screening is highly controversial. The nonprofit California-based organisation the Center for Genetics and Society has called its use here “a considerable reach by the assisted-reproduction industry in the direction of techno-eugenics”.
The polygenic screening for Aurea was provided by a New Jersey-based company called Genomic Prediction. The gene-sequencing company Orchid Biosciences in California now also offers an embryo-screening package that assesses risks for common diseases such as heart disease, diabetes and schizophrenia.
Genetic screening of IVF embryos for health reasons, known as preimplantation genetic diagnosis or PGD, is not new in itself. In the UK, it is permitted by the Human Fertilisation & Embryology Authority, which regulates assisted conception technologies, to look for specific gene variants associated with around 500 diseases, including cystic fibrosis and Tay-Sachs disease.
The diseases conventionally screened with PGD are mostly caused by a mutation in only a single gene. They can be nasty but are typically rare. In contrast, most common health problems, such as heart diseases or type 2 diabetes, are polygenic: caused by complex interactions among several, often many, genes. Even if particular gene variants are known to increase risk, as for example with the BRCA1/2 variants associated with breast cancer, such links are probabilistic: there’s no guarantee that people with that variant will get the disease or that those who lack it will not.
So someone’s genetic profile – the variants in their personal genome – can be used to make predictions about, say, how likely they are to develop heart disease in later life. They can be assigned a so-called polygenic risk score (PRS) for that condition. Aurea’s embryo was chosen because of low PRSs for heart disease, diabetes and cancer. PRSs can be used to predict other things too, such as a child’s IQ and educational attainment.
He reports what the father of the first PGD child said about being willing to cull others of his own embryos to achieve a possibly healthier child:
Aurea’s father, North Carolina neurologist Rafal Smigrodzki, has argued that part of a parent’s duty “is to make sure to prevent disease” in their child. Polygenic testing, he says, is just another way of doing that.
On the ethics of this new form of health science, Ball finds mixed viewpoints. First:
Ethics philosophers Sarah Munday and Julian Savulescu have argued in favour of allowing polygenic screening for any trait that can be shown to be “correlated with a greater chance of a life with more well-being”.
Yet most regulators and many experts feel that there is not yet any justification for using them to try to improve the health outcomes of IVF children. “It’s not seen as ready for primetime use,” says [bioethicist Vardit Ravitsky of the University of Montreal]. “It’s still at a research stage. So when you start jumping straight into implementation, especially in a reproductive context, you’re in a minefield.”
An article in the New England Journal of Medicine in July pointed out that benefits of PRS embryo selection are likely to be very small, all the more so for people not of European heritage, for whom genomic data are less extensive and so less reliable for prediction.
And once such screening methods are permitted, where does it stop? Already, American couples can screen embryos for gender, complexion and eye colour. What’s to stop a company offering to screen for a non-disease trait such as height or intelligence?
“There’s no reason to think polygenic embryo screening will end with conditions like heart disease and diabetes,” says Katie Hasson, associate director of the Center for Genetics and Society. “Screening for schizophrenia and other mental illnesses is already on offer. These directly echo eugenic efforts to eliminate ‘feeble-mindedness’. We are talking about deciding who should be born based on ‘good’ and ‘bad’ genes.”
'Borderline malpractice'
To avoid genetic stratification of society, some have suggest governments make this procedure free.
But Hasson believes that this wouldn’t solve the problems of inequality that such techniques could exacerbate. Even if PRSs for smartness, say, have little real predictive value, she says that “belief in genomic predictions can itself be a driver of intense inequalities in society” by reinforcing ideas of genetic determinism.
“Families that invest their money, time and hopes in this kind of screening and selection will have children they believe are genetically superior and those children will be treated as superior by their parents, care-givers and educators.”
Social pressure could make it hard to resist polygenic screening if it’s on offer in our hyper-competitive societies. “Once you do IVF, you feel pressure to use any add-on service or test that the clinic offers you,” says Ravitsky. “Look at what happens today when a woman declines prenatal screening or amniocentesis. Many women feel judged, not just by peers but by healthcare providers.” The idea that it’s all about autonomy of choice can be an illusion, she says.
This is the way Ball expresses his attitude to the process where several embryos of the same parents compete with one another for the highest scores:
Even if [these scores] have little real value in forecasting the prospects of a child, evidently a market exists for them. In countries such as the US where assisted conception is weakly regulated, companies can make unrealistic and exploitative promises. Couples might even elect to have a child via IVF specifically to avail themselves of such opportunities. It’s a gruelling process that carries risks in itself, but women might feel compelled to use it, even though Ravitsky thinks that allowing someone to do so for this reason alone would be “borderline malpractice”.
“As a society, we’re very far from knowing how we want to use these potential technologies,” says Ravitsky, but, she adds, “we are already living in the grey zone”.
Regulators of health techniques will seek the views of the public in making the rules or proposing legislation. Therefore, members of the public have to be up with the play. When called upon, we have to be ready to join with the like-minded to make submissions to avoid the Oppenheimer Principle. We don't need to go down every path that is open to scientific research. An equivalent choice, much debated, is whether we should put global resources into finding ways to defeat desertification, and global warming, rather than explore space.
But even within the world of gene manipulation, there is the victimless option of somatic gene therapy, where genetic material (RNA) is introduced into an appropriate cell type or tissue in a patient in such a way that it alters the cell's pattern of gene expression to produce a therapeutic effect. This is the view of David Jones, director of the Anscombe Bioethics Centre, which serves the Catholic Church in the United Kingom:
The real promise of 'gene editing' techniques is the hope of ethical and effective therapy of children or adults who were born with conditions that currently have no cure. Research should focus on development of safe and effective somatic gene therapy, not on yet-more-destructive experimentation on human embryos.
How many lives are lost?
One piece of information we need to take on board is the statistic that stories and journal articles about genetic testing don't give readers: How many human embryos will be discarded in pursuit of a single "improved" version?
One answer to this question, though relating solely to in vitro fertilisation, is taken from a dissertation by a doctoral student submitted at Duquesne University in the US in 2017:
The Church does not condemn persons created by technical procedures. Those born following in vitro fertilization possess dignity and are made in God’s image and likeness.
Of the over 400,000 in vitro fertilization babies born annually [in the United States], the concern is for the human beings created in the laboratory that will die before given a chance to live.
It is estimated that only one in six embryos created following in vitro fertilization will make it to birth. Some estimates are as high as 30 embryos are created for every child born by in vitro fertilization. In vitro fertilization treats the new human being as little more than a cluster of cells to be graded, selected, and discarded. The loss of life is ignored and accepted by the in vitro fertilization industry.
These failures and fatalities are not even recognized for what they are by most physicians who perform in vitro fertilization. Loss of life has become a normal and standardized aspect of the procedure. Additionally, there is significant concern for the thousands, possibly millions of human embryos who are frozen. What will be the outcome and disposition of these cryopreserved embryos? [*]
A further concern is the lack of understanding among medical researchers that there is a spiritual element to human life beyond the physical. With recognition of the transcendental and the immortal character of the human being it becomes clear that human life is not limited by disease, pain or suffering, though they may be disabling with regard the "normal" lifestyle.
Families with a member who has Down Syndrome have hailed the love those members tend to display or evoke from those around them.
Researchers have also found an upwelling of positivity in families with children born with trisomy 13 and trisomy 18 (T13-18). Such children have low survival rates and survivors have significant disabilities. For these reasons, interventions are generally not recommended by providers.
The research finding published in the journal Pediatrics states:
Parents reported being told that their child was incompatible with life (87%), would live a life of suffering (57%), would be a vegetable (50%), or would ruin their family (23%). They were also told by some providers that their child might have a short meaningful life (60%), however.
Thirty percent of parents requested "full" intervention as a plan of treatment. Seventy-nine of these children with full T13-18 are still living, with a median age of 4 years. Half reported that taking care of a disabled child is/was harder than they expected. Despite their severe disabilities, 97% of parents described their child as a happy child. Parents reported these children enriched their family and their couple irrespective of the length of their lives.
The researchers add:
Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.
That parents are able to rise to the occasion and respond with heroism in their care of a special needs child is something that researchers and healthcare providers often fail to understand. That is why those of the "expert class" cull some human beings in favour of what they consider to be an improved version.
Technologies such as those involving the harvesting of foetal stem cells, use of mitochondrial DNA and CRISPR techniques, the making of human-nonhuman chimera, and transhumanism associated with germline genetic modification, all warrant attention within the public arena, and strict supervision by government and professional bodies within the medical community.
We must not let this area of ethics add to the list of disasters due to undisciplined scientific endeavour, to overreach, by the scientists among us, as with the atom bomb project, which continues to threaten human existence.
[*] Stock, Gregory and John Campbell, eds., Engineering the Human Germline (Oxford, UK: Oxford University Press, 2000), p126.
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