Five Questions about Lulu and Nana’s Genome Editing
The news
It was early in the morning when I was checking science news before work. I just had written a report about a new technology called genome editing aimed at modifying the genetic material of cells and organisms.
I had reported the last scientific community’s recommendations regarding such a technology. It promotes research in this field, while it discourages its use in embryos intended for pregnancy.
Suddenly it was there… filling my whole screen. It was the video of Dr. He announcing the birth of the twins, Lulu and Nana, derived from a genome editing procedure. My jaw dropped while I was trying to figure out where this news was coming from.
By the end of the day, I realized it was not fake news, but just the reality which had reached us.
The reasoning
You may be thinking why did such news shock me that much? The birth of babies is always a blessing. Genome editing is a promising technique that has brought hope regarding prevention and treatments of so many diseases. Indeed, most of its potential uses are a blessing.
Nevertheless, the irresponsible use of such technology can bring unwanted and unexpected consequences, as was Dr. He case. Allow me to elaborate. And let’s talk about why it might be important to know about such findings not only for scientists, but for everyone around the world.
1. How Were Lulu and Nana Conceived?
“Two Chinese girls called Lulu and Nana arrived in the world crying as healthy as any other baby”, announced in a You Tube video Dr. He Jiankui, professor at the University of Science and Technology of China, on November 25th, 2018.
The babies were born as a result of an intervention performed by Dr. He and his team. In this experiment they modified the genetic material of Lulu and Nana just after conception. It was unexpected news, since technology and humanity were not prepared for the results.
Dr. He and his team obtained sperm from the father infected with the human immunodeficiency virus (VIH), and eggs from the healthy mother. They then fertilized the eggs with spermatozoids in a laboratory. In this way Lulu and Nana were conceived through in vitro fertilization.
When was Lulu and Nana’s genetic information modified? As a result of such fertilizations researchers obtained two healthy one-cell zygotes. At the moment of fertilization, they added a protein with instructions to modify the zygote genetic information.
You may be thinking, what happened to the modified zygotes? After a few days, those zygotes developed into two embryos of about five days old. And they implanted these embryos into the mother´s uterus. Nine months later, Lulu and Nana were born.
2. How was the Genetic Material of the Babies Modified?
Next, let’s see next what genetic material is, how it can be modified, and how Lulu and Nana’s genetic material was modified.
Genetic material in human beings
DNA (deoxyribonucleic acid) is the genetic information of any individual, including Lulu and Nana. There is more. It is located in almost every single cell of the human body. But, how was Lulu and Nana’s DNA modified? Well, scientists used technology called genome editing.
Genome editing tool
Genome editing modifies the DNA of a cell or an organism to change its characteristics. What kind of characteristics can genome editing change? It can change some non-visible and visible characteristics. For instance, it can modify specific pieces forming the DNA that cause diseases.
Indeed, scientists are helping to bring hope to humanity by using genome editing to prevent and treat diseases.
How does genome editing work? Editing the DNA chain is similar to editing the frame forming a film stock. What I mean, one cuts DNA in the precise place where one wants to make a modification. Then one cuts a fragment out and replaces it with the insertion of a new fragment.
Lulu and Nana’s DNA Modified with Genome Editing
Thus in Lulu and Nana’s case, researchers inserted a genome editing tool in their cells when they were only one-cell zygotes. The tool first recognized the specific DNA region they wanted to modify. Thus, it modified the selected region.
3. What was the Purpose of Modifying the Babies’ DNA?
Lulu and Nana were born from a healthy mother and a father with human immunodeficiency virus (VIH).
Here is the interesting part. Researchers modified Lulu and Nana’s DNA by changing a gene (called CCR5) which facilitates the infection of cells with HIV. Thus, the purpose was protecting them from developing the HIV infection. And their DNA was modified when they were only one-cell zygotes. As a matter of fact, a zygote is a predecessor of an embryo.
You may be thinking, is genome editing performed systematically in embryos to avoid inherited diseases? Well, scientists are developing research to use genome editing to make changes in the DNA of early embryos in order to avoid passing down heritable diseases.
This is important to note. Scientists are perfecting these kinds of experiments at the moment. Thus, they do not use the resulting embryos for intended pregnancy, according to the scientific community’s recommendations.
But there is a catch. Dr. He performed such procedure discarding the warnings previously mentioned.
How did the world react to such a situation? Well, as a result a Chinese court sentenced Dr. He to three years in prison for “illegal medical practice”, According to Nature MAGAZINE. They also gave shorter sentences to two other colleagues who assisted him. And the court also fined Dr. He 430, 000 USD.
Furthermore, Dr. He and his team are not allowed to work anymore in the human reproductive field.
And I am not going to stop here. Next let’s see what kinds of concerns this experiment is raising.
4. What Concerns did Lulu and Nana’s Genome Editing Cause?
Safety and Efficacy Concerns
Lulu and Nana’s genetic modifications have brought concerns regarding the safety and efficiency of genome editing technology. Let me elaborate. Researchers performed genetic changes in the DNA of the babies by using the genome editing tool.
The tool first recognizes the target place through the DNA where it will make the modifications. It then makes the wanted changes. There is just one problem. Through the DNA’s structure there may be similar structures, so that the tool could accidentally make changes in those other similar pieces.
Let me clarify this for you. These accidental unwanted modifications and the interaction among them may cause dangerous health issues. Thus, there are concerns about Lulu and Nana’s health.
Procedural Ethical Concerns
You do not want to miss this next part. The purpose of Dr. He’s experiment was to prevent the babies from being infected with HIV, since the father has this disease. First, it is not certain that the babies will get infected. Secondly, there are available treatments to prevent and to treat the disease.
Here is the main issue with that. It means that the genetic modification was not necessary and ultimately it was not the only available alternative to prevent the disease.
But that is not all. Dr. He developed his research in secrecy without transparency to the scientific community. And keep reading. The parents who donated the eggs and the sperm were not aware of the experiment’s implications. It means nobody properly informed the parents about it.
Additionally, the procedure can result in serious health issues for the babies. Finally, Dr. He poorly designed the experimental protocol according to experts in the field.
In the end, Dr. He’s experiment lacked any medical or scientific justification to be fulfilled.
Ethical Concerns
Stick with me here, because there are also ethical issues related to genome editing made in embryos or their predecessor cells. For instance, this procedure rases concerns about human rights of embryos.
Let me clarify. The World Health Organization’s (WHO) Constitution states “…the highest attainable standard of health as a fundamental right of every human being.” It means that everyone has the right to accessible quality health careto promote the highest achievable level of health.
But here is yet another catch. Currently genome editing applied to human embryos does not guarantee successful outcomes. Therefore, this technology with uncertain outcomes and performed in embryos intended for pregnancy would damage the health right of children from this procedure.
And on top of that, health rights include the freedom “to control one’s health and body, as well as to be free form interference (for example… of non-consensual medical treatment and experimentation),” according to WHO. The problem is that an embryo does not have the capacity to exercise such freedom.
In clinical terms the patient could not consent or make a voluntary decision about whether to accept the medical procedure or not.
It is important to mention that experts point out that other medical technologies have presented similar ethical challenges. However, they have moved forward into clinic applications, as long as they are sufficiently beneficial.
In the end, balancing the potential benefits and risks is also an approach used to consider whether a technology is implemented, as well as when and how.
5. Why do ethics matter in new technology regulation?
Here is the bottom line. Most of the time new technology legislation around the world relies on ethical principles. That helps to protect the rights and interests of people. Thus, people can take advantage of technology by increasing the benefits and reducing potential risks.
So, what is the final catch? Ethical principles are as varied as beliefs, as well as people around the world are. This means that it is still necessary to create a global dialogue about ethical issues regarding genome editing performed in embryos leading towards birth. This would help reach agreement in global regulations regarding human heritable genome editing.
To date, performing human genome editing with the goal of giving birth is not allowed around the world.
