Why we are not ready for genetically conceived babies

The media buzz with surprise announcement that a Chinese researcher, Jainkui He, has created the world's first genomic twins. He did, apparently, to provide resistance to HIV, the virus that causes AIDS.

Professor He, who was apparently working with Michael Deem, a former supervisor at Rice University, took advantage of the work of Jennifer Doudna and Emmanuel Charpentier in 2012, who presented a new, simpler way to change the DNA of organisms humans and non-humans using CRISPR-Cas9 technology. It also builds on the work of molecular biologist Feng Zhang, who has optimized this genome editing system for use in human cells.

He claims that the genome modification of the human germ line has been transferred from the laboratory to the administration room – something that other scientists might have thought of despite ethical concerns.

The scientific community has largely condemned its decision to start a pregnancy with the help of genetically modified embryos – described as "dangerous," "irresponsible" and "crazy." What to do if mistakes are made How can we be sure that this powerful technology will benefit humanity? We are ready for the consequences of the genetic engineering of our own evolution?

We argue that we can not allow individual scientists to decide the fate of the human genome. Hereditary modification of the human genome is an important existential threat, as changes can persist for generations in the human population, with unknown risks.

We must engage in an inclusive global dialogue – involving experts and the public – to develop a broad societal consensus on the use of genetic technologies.

Possible mutations or forced sterilization

He announced to the world that he had edited the genome of human embryos for seven couples using CRISPR-Cas9 technology. According to him, two of these embryos gave rise to a pregnancy and binoculars (Lulu and Nana, pseudonyms) were born.

The purpose of editing was to confer resistance to HIV by modifying the CCR5 gene (gateway of the protein through which HIV enters human cells). He claims that these changes were verified in both twins and that these data were reviewed and described as "probably accurate" by George Church, a world-renowned Harvard geneticist.

However, the evidence suggests that the procedure was unnecessary, unlikely to provide a benefit, and even to cause harm. Although Lulu and Nana's father is HIV-positive, it is unlikely that he has passed it on to his children through standard IVF procedures.

Children born to genome editing are genetic mosaics with uncertain resistance to HIV and perhaps reduced resistance to viral diseases such as influenza and West Nile. This is because the CCR5 gene it has deactivated plays an important role in resistance to these diseases.

In addition, it is possible that involuntary mutations are caused by the CRISPR procedure. These health risks can not be overestimated as the impact on twin girls in terms of susceptibility to infectious diseases or cancer is likely to be a concern throughout their lives.

Another unintended consequence for twins is their reproductive health and freedom. As the age of procreation approaches, will they be confronted with the possibility of "forced" sterilization in order to prevent their modified genes from being passed on to future generations?

Multiple investigations

The University of Science and Technology of South Shenzhen, China, where he is employed (currently on leave from February 2018 to January 2021), is away from the researcher and will form an independent international committee charged with Investigate controversial research widely disseminated.

Rice University, where Michael Deem works, also announced an investigation.

The Shenzhen HarMoniCare Women's and Children's Hospital has launched a survey on the validity of ethical documents provided by He, which document the approval of research ethics.

Importantly, the ethics approval was only uploaded to the Chinese clinical trial database on November 8 as a retrospective record – probably at the same time. time when the twins would be born.

Creator babies by powerful elites

With genetic engineering coming out of the bottle, we need to ask ourselves if we need more time to think about ethics?

A fair and equitable society is a society with less disparity and more justice. A predictable consequence of allowing (or even encouraging) individuals to genetically modify their children will be greater disparity and greater injustice – and not just because of limited access to technology. genome editing.

The inevitable increase of discrimination, stigmatization and marginalization as powerful scientific and commercial elites decide which traits are desirable and which traits are not.

Although he disavows any interest in the so-called "designer babies" whose parents have chosen the color of their eyes, hair color, IQ and so on, we are forced to contemplate such a dystopian eugenic future If we continue in this way. .

The human genome belongs to us all. As such, we must commit ourselves to doing everything in our power to respond to the 2015 warning of the Organizing Committee of the International Summit on the Modification of Human Genes in order to achieve a "Broad societal consensus" on how we should proceed or not. modify it.

In this regard, it is comforting to ask Feng Zhang to impose a moratorium on the implantation of published embryos and remind his fellow scientists that "in 2015, the international community Research has stated that it would be irresponsible to proceed with any germ line editing without a broad consensus of society about the relevance of the proposed application. & # 39; "