The fate of Lulu and Nana and Ethics of Genetic Engineering

Updated: Jun 18

A short update on the Legitimacy and Potential outcome of CRISPR Gene Editing

Originally Published by Illumination curated on Medium

Photo by National Cancer Institute on Unsplash

In 2018 a Chinese biophysics researcher and associate professor of the Department of Biology at the Southern University of Science and Technology (SUSTech) in Shenzhen, China, He Jiankui, began a project to help patients with HIV-related fertility problems. The subjects were offered standard in vitro fertilization services and, in addition, the use of CRISPR gene editing (CRISPR/Cas9). The latter is a novel technology that modifies DNA at the embryonic stage. Using CRISPR, He edited embryos’ genomes by removing a gene component called “CCR5” in an attempt to confer genetic resistance to HIV.

The clinical experiment was performed secretly until 25 November 2018. Later on, the project details were leaked by the MIT Technology Review, which broke into the story of the human investigation based on information from the Chinese clinical trials registry. Since the Chinese scientist could no longer keep the lid on his research, he publicized the birth of Lulu and Nana, the first genetically modified babies, in 2019!

The twin girls were born in October 2018, followed by the second birth or the third baby born in 2019. The exact timing as to when the third child was born is uncertain. There seems to be no information available about this third child at all.

Jiankui’s controversial research included concern for the girls’ well-being. Hence After presenting his study at the Second International Summit on Human Genome Editing at the University of Hong Kong on 28 November 2018, the Chinese administration halted his research activities. Since then, the so-called “He Jiankui affair” stands for the scientific and bioethical dispute distressing the practice of genome editing. The affair was led to the prosecution of He Jiankui and two of his collaborators, Zhang Renli and Qin Jinzhou. “He” was also fined 3 million Chinese yuan, and the Chinese government tightened restrictions on their human genome editing policies.

OR, to begin with, and maybe, Editing the Embryonic Gene for the greater good of rendering Lulu and Nana resistant to HIV was wrong.

According to some scholars, Embryo editing is only ethically justifiable when the benefits outweigh the risks.

Kiran Musunuru is an American cardiologist, Professor of Medicine at the University of Pennsylvania Perelman School of Medicine, and expert researcher in genetics and genomics of cardiovascular and metabolic diseases. In addition, he is a leading wizard in the field of gene editing.

According to Kiran, His manuscript contained, as he defines it, “widespread mosaicism” in twins Lulu and Nana, which implies that the edits to the gene were not uniform in all cells. That means that all changes appeared differently in different cells. Accordingly, the Chinese scientist may have successfully edited half of Lulu’s CCR5 genes, while the rest are entirely normal, connotating that both twins could be fully vulnerable to HIV. So, Jiankui’s team did not even honor an unmet medical need.

While the twins’ father was HIV-positive, there is already a well-established way to prevent an HIV-positive father from infecting embryos, the “sperm washing” method. Therefore, if substantiated, the only benefit of the attempted gene transformation would have been a reduced risk of HIV infection for the twins later in life.

The possible upshot of Gene Editing does not end in the failed Mission

Few researchers at the MIT institute believe that China’s CRISPR twins Lulu and Nana might have inadvertently enhanced their brains.

Alcino J. Silva, a neurobiologist at the University of California, Los Angeles, recently uncovered the CCR5 gene's role in memory and the brain’s ability to form new connections, which are predicted to have probably impacted cognitive function in the twin”.

The Final Thought

The faith of lulu and nana is not evident at this moment. I have tried exploring various kinds of literature to see the health status of the twins and the third baby but could not find much information.

Genetic engineering has been a topic of scientific discussion for decades; however, noteworthy progress in genetic technology and gene editing has become a reality in recent years. But as far as the fate of Chinese scientists is concerned, he was found guilty in December 2019 of ‘illegal medical practices’ and convicted of three years in prison.

Naturally, many of the criticisms directed at his experiment seem justified, although we still lack precise information about it. A recent paper analyzes He Jiankui’s case concerning one of the most challenging problems in procreative ethics: the “non-identity problem.”

The non-identity problem, developed in D. Parfit’s Reasons and Persons (1984), is one of the central problems of the ethics of future generations. While most ethical problems concern actions that violate the rights or decrease the well-being of existing people, some activities also determine future people’s existence, number, or identity. Moreover, those actions were peculiar since, strictly speaking, they cannot benefit or harm any individual, as they are the source of their presence. Therefore, according to the publication, Since He Jiankui’s action intended to determine future people’s existence, number, or identity with HIV and today’s mental disability, the Chinese scientist may not have been ethically at fault.

Photo by National Cancer Institute on Unsplash

Historically, governments have strained to find pretexts to persuade citizens that micro-regulations are necessary to prevent technology from tumbling into the wrong hands. But that is because they have perpetually applied the pro and cons of such technologies universally without considering individual patient needs. That is why We should only use genetic engineering to make the patients comfortable, cure them sometimes, and treat them frequently.

Editing genes for health and disease is acceptable but should never be discriminatory. While at it, we should also outline the setting and application for which the technology is meant to prevent abuse. Genetic editing must follow the personalized medical treatment standards.

Everyone deserves to be healthy and seek out the most up-to-date treatment plan. That includes CRISPR to prevent diseases like cystic fibrosis at conception based on personal choices, technology, and the deed of clinical judgment.