On November 29, оnе of Nigеriа’ѕ highlу popular on-air personalities, Tоѕуn Bucknor, wаѕ buriеd in Lagos following her dеаth resulting frоm complication of ѕiсklе сеll diѕеаѕе сriѕiѕ.
Babies of parents at most risk of sickle cell disease are one of the numerous groups that are expected to benefit from any procedure that can be used to correct genetic errors. One of such is gene editing and until recently, it was largely hypothesised although it has been extensively applied in agriculture.
But hypothesis became an imminent issue when a scientist in China announced he has created the world’s first genetically edited babies, in a potentially ground-breaking and controversial medical first.
If true, it would be a profound leap of science and ethics. This kind of gene editing is banned in most countries as the technology is still experimental and DNA changes can pass to future generations, potentially with unforeseen side-effects.
Many mainstream scientists think it is too unsafe to try, and some denounced the Chinese report as human experimentation.
He Jiankui of Southern University of Science and Technology in Shenzhen, said he altered embryos for seven couples during fertility treatments, with one pregnancy resulting so far. He said his goal was not to cure or prevent an inherited disease, but to try to bestow a trait that few people naturally have: an ability to resist possible future infection with HIV.
But there is no independent confirmation of He’s claim, and it has not been published in a journal, where it would be vetted by other experts.
Great confusion among scientists
When the news broke, the global scientific community was thrown into frenzy as stakeholders begin to come to terms with the fact the lid protecting a delicate process might have been blown open and everyone that has access to CRISPR technology might begin to start genetic editing that could lead to more serious problems for babies and for generations to come.
Putting this into better perspective, many scientists were astounded to hear of the claim and strongly condemned it. It was “unconscionable … an experiment on human beings that is not morally or ethically defensible,” said Dr Kiran Musunuru, a University of Pennsylvania gene-editing expert.
“If true, this experiment is monstrous,” said Julian Savulescu, a professor of practical ethics at the University of Oxford. “The embryos were healthy. No known diseases. Gene editing itself is experimental and is still associated with off-target mutations, capable of causing genetic problems early and later in life, including the development of cancer.”
“There are many effective ways to prevent HIV in healthy individuals: for example, protected sex. And there are effective treatments if one does contract it. This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit. In many other places in the world, this would be illegal punishable by imprisonment.”
But Jiankui is not backing down
He used the International Human Genome Editing Summit held at the University of Hong Kong to reply to critics of his Crispr-Cas9 trials altering baby DNA for HIV resistance.
He said he was proud of his work, and claimed another woman enrolled in his trial was pregnant with a similarly modified baby.
In a planned presentation, He, an associate professor at Southern University of Science and Technology, in Shenzhen, described how he used Crispr-Cas9 to modify a gene called CCR5 in a number of embryos created through IVF for couples with HIV-positive fathers.
The modification was intended to mirror a natural mutation found in a small percentage of people which makes them resistant to the virus. Two girls named Nana and Lulu were born with the genetic changes, he said.
Nobel laureate David Baltimore, an organiser of the summit, who is professor emeritus of biology at the California Institute of Technology, called He’s work irresponsible. “I think there has been a failure of self regulation by the scientific community because of a lack of transparency,” Baltimore said.
WHO steps in
Considering the controversies and rebukes the research has attracted, the World Health Organization (WHO) has decided to step in and start putting the regulatory framework for gene editing together.
In a statement made available to healthnews.africa, the global health body announced it is establishing an expert panel to develop global standards for governance and oversight of human gene editing.
“WHO is establishing a global multi-disciplinary expert panel to examine the scientific, ethical, social and legal challenges associated with human gene editing (both somatic and germ cell),” WHO stated.
The task for the panel is to review the current literature on the state of the research and its applications, and societal attitudes towards the different uses of this technology.
WHO also announced it was aware of the recent application of tools such as CRISPR-Casp9 to edit the human genome and it admitted this spurred it to start the process of developing of standards in the area.
“As WHO proceeds, we are liaising with relevant UN and other international agencies, and are in communication with Academies of Science and Medicine as well as with bodies that have produced previous reports. WHO will be approaching leading experts in the world, and publishing the membership of the panel once we receive responses and assess conflicts of interest,” WHO stated.
The decision of WHO to develop interest in regulating gene editing is expected to make it more difficult for scientists in developed countries to try such experiments. In the US for instance, the National Institute of Health (NIH) will not approve such experiment without a rigorous ethical consideration.
But in many African countries where those in charge of the health ministries are not well versed in genetics and CRISPR procedures, scientists maybe available to circumnavigate the ecosystem to their advantage.
Stakeholders that spoke to healthnews.africa on this subject expressed concerns over the numerous shortcomings in the regulation of experiments in Africa and the relative ease with which researchers that had been blocked from carrying out dangerous experiments in their primary institutions can easily get approvals in many African countries if they are able to convince or connive with the right persons.
Industry experts believe that in addition to developing its policies on gene editing, WHO also needs to draft policies and regulations that will prevent scientists that disregard bioethics from moving their laboratories and potentially dangerous experiments to Africa which has a full plate already.