Scientists and ethicists in Canada and abroad are expressing concern after a Chinese researcher claimed he used gene editing to alter the DNA of recently born twin girls.
released a YouTube video on Sunday stating that he used CRISPR-cas9 technology to modify an embryo so that the girls would be resistant to HIV.
âTheir parents donât want a designer baby, just a child which wonât suffer from a disease which medicine can now prevent,â He says in the video, which was posted on the eve of the Second International Summit on Human Genome Editing in Hong Kong.
âGene surgery is and should remain a technology for healing,â He added. âEnhancing IQ or selecting hair or eye colour is not what a loving parent does. That should be banned.â
He went on to say he knows his work âwill be controversialâ but he believes âfamilies need this technology.â
The work, which also involved U.S. bioengineer Michael Deem, was not peer-reviewed. Heâs claims have not been confirmed by other scientists. An investigation is underway and He has been suspended from his university.
Bioethicist: âYou canât just pretend to be Godâ
Canadian bioethicist Francoise Baylis says that if Heâs claims are verified, sheâs disappointed that he chose to move forward altering the DNA, a change that will be passed on from generation to generation.
âThis is not a private decision. This is not something for a scientist on their own, or even a group of scientists to decide,â Baylis, a professor at Dalhousie University in Halifax, told Âéśš´ŤĂ˝.
âThe human genome belongs to all of us and in some sense we all get to have a say,â Baylis added. âYou just canât pretend to be God. You canât just decide to prove (Charles) Darwin wrong and that youâre going to change how evolution works.â
Baylis said there are a number of potential harms from the research, both to the children involved and society at large. âFor example, he might have made a mutation in a place he didnât intend to make a mutation. These children might develop cancer later on.â
Baylis said it was also ethically questionable that He chose to address an HIV gene, when there are other less risky ways to prevent HIV.
âWhy wouldnât you start with something like Huntingtonâs Disease?â she added, referring to a progressive brain disorder that often kills people at young age.
Is a global ban needed?
The question at this point, according to Baylis, is whether there should be a global bans on gene editing until scientists can have a proper debate and potentially reduce the risks of harm.
âWe canât have a discussion if scientists are just going to barrel along and do what they want to do while the rest of us are sort of on the sidelines trying to have a conversation,â she said.
In Canada, the research would likely have broken the , which states that âno person shall knowingly alter the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants.â However, many countries have less stringent rules.
Other scientists speaking out about Heâs announcements on Monday included Feng Zhang and Jennifer Doudna, who developed CRISPR-cas9.
âNot only do I see this as risky, but I am also deeply concerned about the lack of transparency,â said Zhang, a scientist at MIT's Broad Institute.
Doudna, who helped to organize the Hong Kong conference, told The Associated Press that He met with her Monday and that he will be allowed to address the conference on Wednesday.
However, she also expressed concerns, pointing out that ânone of the reported work has gone through the peer review process.â
Dr. Janet Rossant, a senior scientist at Toronto's Hospital for Sick Children, said that if Heâs claims are true, He has moved âway ahead of all the ethical consensus that has been going on internationally.â
Sohnee Ahmed, president of the Canadian Association of Genetic Counsellors, added that he hopes scientists will now âdouble-down to emphasize this is something that should not be happening at this time, not without any kind of oversight."
Tim Caulfield, a professor of health and law at the University of Alberta, said he believes there is âan emerging international consensus that this research should progressâ but added that âwe're not at the state right now where we want to be using this technology in the clinic.â
âUsing these technologies prematurely can really adversely impact the entire scientific field,â Caulfield went on. âI think it's very important that we move forward carefully and in a transparent manner.â
With files from medical affairs specialist Avis Favaro, producer Elizabeth St. Philip, The Canadian Press and The Associated Press