In Great Britain, an important non-governmental organization, the Nuffield Council on Bioethics (NCB), spoke out in recent days on one of the hottest topics in bioethics: genetic editing of human embryos.
In a new report (perhaps better described as an opinion paper) titled Genome editing and human reproduction: social and ethical issues, the organization—founded in 1991 and financed by the Nuffield Foundation, the Medical Research Council, and the Wellcome Trust —states that it is “ethically acceptable” to modify the so-called “code of life,” that is, human DNA.
However, this would only be true if two principles were guaranteed, the text continues: “first, that such interventions are intended to secure, and are consistent with, the welfare of a person who may be born as a consequence, and second, that any such interventions would uphold principles of social justice and solidarity – by this we mean that such interventions should not produce or exacerbate social division, or marginalise or disadvantage groups in society.”
“It is our view that genome editing is not morally unacceptable in itself,” said Karen Yeung, chair of the Nuffield working group. “There is no reason to rule it out in principle,” said the professor of law, ethics and informatics at the University of Birmingham, quoted by The Guardian.
Genetic engineering
It’s not the first time that this independent organization, located on Bedford Square, in the center of London, has shaken up the scientific world. Six years ago, in 2012, the Nuffield Council of Bioethics pronounced itself in favor of the controversial “three-parent baby” technique, that is, in vitro fertilization using genetic material from three parents (two women and a man) to impede the transmission of hereditary mitocondrial diseases. Shortly after, in February 2015, the United Kingdom approved the technique.
What makes genetic editing a very delicate and controversial topic is the fact that it makes it possible to modify the germ line—it could effect future ova and sperm. Consequently, the changes made to the embryo’s genetic patrimony would become permanent, and would be passed on from generation to generation.
At first, the purpose of this editing will be “preventing the inheritance of a specific genetic disorder,” Yeung explains in a statement quoted by Gizmodo.com. “However,” she continues, “if the technology develops, it has potential to become an alternative strategy available to parents for achieving a wider range of goals.”
It is precisely this last aspect that is worrisome, because it opens the door to so-called “designer babies,” conceived “à la carte” or “made to order” according to the parents’ desires. For Jim Denison, writing on ChristianHeadlines.com, “the negative possibilities of embryonic gene editing are frightening.”
“If an embryo can be edited genetically to prevent disease, could it also be altered to enhance capacities?” he asks. Giving an example, he says, ” One genetic hormone (known as EPO) is linked to muscle activity; could an embryo be engineered to produce more EPO and thus enhance muscle strength?” Denison goes on to point out that genetic modifications can cause undesired effects that only reveal themselves when the person is already born, and in later years.
CRISPR-Cas9
One aspect that calls for caution is the fact that the procedure most used by the scientific community for editing the human genome, CRISPR-Cas9, the so-called molecular scissors, could cause greater genetic damage than previously thought.
This warning comes from a study conducted by scientists at the Wellcome Sanger Institute and published last July 16 in Nature Biotechnology.The technique leads to “large deletions and more complex genomic rearrangements,” according to the authors of the study, Michael Kosicki, Kärt Tomberg, and Allan Bradley.
“The observed genomic damage in mitotically active cells caused by CRISPR–Cas9 editing may have pathogenic consequences,” the authors continue. This means that some therapies based on the technique might not as safe as hoped. “There’s a risk of causing cancer sometime in a patient’s lifetime,” says one of the authors, Allan Bradley. “We need to understand more before rushing into human clinical trials,” he adds.
Some reactions
While some describe the the day when we will see the birth of the first genetically edited human baby as “monumental“, the Nuffield Council on Bioethics’s report also creates some controversy. Former molecular biologist and current director of Human Genetics Alert, David King, used strong words on the Sputnikwebsite, calling the Nuffield declaration an “absolute disgrace”, and warning against a slippery slope leading to eugenics and excluding from society people considered genetically inferior, similar to Nazi policies and techniques.
“We have had international bans on eugenic genetic engineering for 30 years. But this group of scientists thinks it knows better, even though there is absolutely no medical benefit to this whatever,” said King to the BBC, recalling that the British people voted “no” to genetically GM food 15 years ago. “Do you suppose they want GM babies?” he asks.
According to Marcy Darnovsky, executive director for the Center for Genetics and Society (a non-profit organization located in Berkeley, California), the authors of the report have “thrown down a red carpet for unrestricted use of inheritable genetic engineering, and a gilded age in which some are treated as genetic ‘haves’ and the rest of us as ‘have-nots.'”
“On first glance, genetic editing of human embryos to treat diseases seems like a laudable project. But the reality is far more complex,” explains Father Tadeusz Pacholczyk, director of education of the National Catholic Bioethics Center, in Philadelphia, Pennsylvania, in an interview with Catholic News Agency (CNA).
“Permission for research on genetic modification of embryos will open up the floodgates for further subjugation of vulnerable, embryonic humans, individuals at the earliest stages of their existence who will be created in unsuitable settings, manipulated, manhandled, and will often end up perishing as part of the experiment,” says Fr. Pacholczyk, who also quotes the Vatican document Dignitatis Personae: “The human being is to be respected and treated as a person from the moment of conception; and therefore from that same moment his rights as a person must be recognized, among which in the first place is the inviolable right of every innocent human being to life” (#4).
Recommendations
The Nuffield Council on Bioethics also included a series of 15 recommendations in its report, targeted at research organizations (1-2), the British government (3-7), and governments in general, even outside of the United Kingdom (8-12), and lastly, regarding licensing and regulation (13-15).
In words addressed to the British government, the document emphasizes, for example, that “before any move is made to amend UK legislation in order to permit heritable genome editing interventions, there should be sufficient opportunity for a broad and inclusive societal debate,” which should be “encouraged and supported without delay” on an international level.
It also recommends that “governments in the UK and elsewhere should work with international human rights institutions such as the Council of Europe and UNESCO to promote international dialogue and governance with regard to heritable genome editing research and innovation.”
Lastly, the text recommends that “the effect on individuals and society, including over generations, should be closely monitored as far as possible, compatibly with the privacy of the individuals concerned.”
In any case, beyond concerns regarding the technical feasibility and safety of genetic editing, the report raises a series of fundamental ethical and social questions for humanity’s future. In this context, we should remember the old principle mentioned by Pope Francis in his discourse to the participants at the IV International Conference on Regenerative Medicine organized by the Pontifical Council for Culture. “Not everything technically possible or doable is thereby ethically acceptable,” said the Pontiff last April 28.
