Ethical concerns with gene-edited babies with gene-edited babies

Dr Derrick Aarons

Sunday, December 09, 2018

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MUCH has been said about the claim by Chinese scientist Professor He Jiankui that he and his team edited the genes of twin girls after their conception to make them impervious to HIV infection.

The work was reportedly done at the Southern University of Science and Technology in Shenzhen, China. The twin girls, Lula and Nana, were born to Mark and Grace who were a part of a clinical research trial involving seven couples. All the men in the research were HIV-positive, while all the women were not.

The fathers' HIV infection had already been suppressed using specific medications that would have ensured that their off-springs would not have got the disease. The aim of the research was to show that it might be possible for the children to never be infected by HIV over the course of their lives.

Bioethical concerns

The main bioethical issue, however, is not whether Professor Jiankui has been successful in HIV prevention, but rather the 'pandora's box' that has now been busted open by his reported work.

What are some of the specific concerns in this regard?

Well, the issue really revolves around fear of the unknown, and being unable to reverse any unwanted biological changes the process may have brought into effect in future human beings.

So, how does this come about? Well, fundamentally, we are what our genes dictate. Our physical appearance and the various component organs of our body and how they function are all determined by our genes.

However, while some of us go through life very healthily, others may be afflicted by inherited conditions or illnesses acquired during their lifespan within various environments.

One such disease is caused by infection with the human immunodeficiency virus (HIV). When it enters the body, the virus overcomes the body's natural defence mechanisms by attaching itself to a particular protein that allows it to enter and infect the immune cells which should be protecting us. The CCR5 gene is responsible for producing this protein, and so the theory is that if one could remove this particular gene from the body, the virus would not have the protein needed to enter immune cells, and so HIV infection would be prevented.

Gene-editing technology

With the phenomenal recent advances in gene-editing technology and the production of the very inexpensive gene-editing tool, CRISPR-Cas9, Professor Jiankui said his team was able to inject the CRISPR-Cas9 and precisely target and cut out the CCR5 gene that was present among the 20,000 human genes within the fertilised egg.

The result were two gene-edited embryos that were allowed to grow to full maturity and birth.

In 2015, some of the world's leading scientists at the International Summit on Human Gene Editing had cautiously approved the use of gene-editing tools in human embryos, but only under strict research guidelines and without using such researched embryos to establish a pregnancy. However, by allowing Lulu and Nana to be born, Professor He Jiankui has ignored those instructions.

We should note that while there has been a worldwide moratorium on such use of the gene-editing technology, there is no similar worldwide enforceable 'law.'

Historically, countries sign on to specific international agreements which each individual country is then expected to codify into local laws. Notably, some countries of the world, including Jamaica, have no laws or regulations governing research with human beings.

In wishing to draft such legislation, when canvassed recently by IMPACT Justice from the law school in Barbados, none of the 12 Caricom countries that benefit from IMPACT Justice projects indicated any desire for such legislation within the near future.


Unforeseen and unintended consequences may result from experimental gene editing. In a 2016 research study, another group of Chinese researchers tried to modify the CCR5 gene in human embryos but ended up with poor results. They were only able to genetically modify four out of the 26 embryos in the project.

Further, among the four embryos that were modified, not all copies of the CCR5 gene ended up being modified. Even worse, many embryos suffered unintended mutations.

Further complicating this issue, data obtained from Prof Jiankui's research trial's website had shown that one of the foetuses of the twin girls before they were born had a mix of cells that had been edited differently, meaning that some cells might possess the ability to resist HIV infection while others did not.

While gene-editing technologies have a great potential to be hugely beneficial to humanity, currently there is much risks in the process since any modified genes are passed on to the off-springs for generations.

Current research cannot predict whether, in cutting out a particular gene, the technology might not also inadvertently modify other genes that are beneficial, or alter the role that the remaining genes will play. That will only come to light after the child has been born.

Dr Derrick Aarons MD, PhD, is a consultant bioethicist and family physician; a specialist in ethical issues in health care, research, and the life sciences; the health registrar and head of the health secretariat for the Turks and Caicos Islands, and a member of UNESCO's International Bioethics Committee.

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