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A Chinese scientist says he edited babies’ genes. What are the rights of the genetically modified child?

- December 6, 2018
He Jiankui, a Chinese researcher, spoke at a conference on human genome editing in Hong Kong in November and claimed to have helped make the world’s first gene-edited babies. (Kin Cheung/AP)

With the claim that the first gene-edited babies have already been born in China, a science fiction has become a political fact. And the world needs to consider how these children might be treated.

First, the background. On Nov. 28, Chinese scientist He Jiankui announced at the Second International Summit on Human Genome Editing in Hong Kong that he had used CRISPR-Cas9 to disable copies of the CCR5 gene in human embryos, in a bid to prevent the embryos’ father from transmitting his HIV infection. If the research had stopped there, it might have garnered just the routine peer-review criticism.

What shocked the scientific community was that He said that he had ignored all established ethical and scientific protocols by implanting genome-edited embryos in the mother’s womb for the purpose of reproduction and that live twins had been born.

Scientists and ethicists see this as “monstrous,” crossing a moral barrier

Professor Julian Savulescu of Oxford University said that, if true, this was a “monstrous” experiment in reproductive medicine. It had no moral or scientific justification, given that the medical profession can successfully prevent fathers from transmitting HIV without genetic engineering.

What’s more, according to the New York Times, “Dr. He said that in one of the twins, both copies of the CCRgene were disabled, but that in the other twin, only one copy was.” This left the second twin vulnerable to HIV — and the control subject for the twin with both copies disabled.

Researcher Maria Jasin of the Memorial Sloan Kettering Cancer Center pointed out that this experiment might hurt the “family dynamics” among the twins and their parents. One twin has been deliberately and permanently enhanced more than the other. How will that affect the siblings — not only their health, but also their relationships and in society?

Fiction has already considered this possibility

In 1997, the film “Gattaca” offered us a world in which genetic engineering is the norm and children resulting from ordinary sexual reproduction are treated as inferior. In the movie, a pair of brothers hold death-defying swimming contests to see who is stronger: the genetically engineered son, or the son born because his parents had unprotected sex? The audience doesn’t blame the brothers, or even their parents, for their reckless fraternal fighting; rather, we blame the dystopian eugenic society in which they were raised.

Coincidentally, this year is the 200th anniversary of Mary Shelley’s 1818 novel “Frankenstein,” another cultural resource for considering the ethics of genetic engineering. Victor Frankenstein’s abandoned and abused Creature is cast out of society, becoming murderous from isolation and loneliness. The Creature begs his father-scientist for a fellow creature, arguing that he has the “right” to love and affection, family and community — as do all children, no matter the circumstances of their creation and birth.

However extreme their scenarios, both “Gattaca” and “Frankenstein” remind us that all children are vulnerable to discrimination based on factors beyond their control — including circumstances shaped by artificial reproductive technology and bioengineering. While “Gattaca” pictured a dystopian society that elevates a genetically modified upper caste, the teenage Shelley imagined the reverse worst-case scenario: devastating discrimination against a bioengineered child.

Shelley’s vision may be more pressing for us today. Consider that Savulescu used the term “monstrous” to describe He’s experiment — a comment that has been widely publicized. But this metaphor of monstrosity may unintentionally demonize the children made by the experiment, rather than holding accountable the rogue scientist behind it.

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What, then, are the rights of genetically modified children?

In July 2018, the Nuffield Bioethics Council pointed out that there is “no international treaty of general application” designated for the “direct” regulation of the human genome or its modification. It called for governments to work within extant “international human rights institutions such as the Council of Europe and UNESCO” to foster robust public discussion and international governance for genome editing. It recommended that governments create an “international Declaration” affirming that “people whose genomes have been edited should be entitled to the full enjoyment of human rights.”

[interstitial_link url=”https://www.washingtonpost.com/news/monkey-cage/wp/2018/06/26/the-u-s-withdrew-from-the-u-n-human-rights-council-thats-not-how-the-council-was-supposed-to-work”]The U.S. withdrew from the U.N. Human Rights Council. That’s not how the council was supposed to work.[/interstitial_link]

Why does this matter? Since 1997, 50 to 100 children are known to have been genetically modified in the germ line, through various techniques involving three-person in vitro fertilization or mitochondrial replacement therapy. Regardless of whether the claim of gene-edited twins in China proves true, we can expect to see many more genetically modified children whose DNA has been heritably altered through CRISPR-Cas9 and other biotechnologies.

The 1989 Convention on the Rights of the Child offers a promising framework for articulating the rights of the genetically modified child as part of the universal human rights of children. The CRC’s preamble states that each child, “for the full and harmonious development of his or her personality, should grow up in a family environment, in an atmosphere of happiness, love and understanding.” Part I, Article 2 specifies nondiscrimination rights, including rights to nondiscrimination toward “disability, birth, or other status.” And Part I, Article 7 specifies rights to “a name,” birth “registration,” “nationality,” and “as far as possible … to know and be cared for by his or her parents.” Now, governments need to elaborate how these apply to genetically modified children.

I propose that two particular rights be articulated in any new international agreement about genome modification:

  1. Children’s right to share love with parents or fitting substitutes.
  2. Children’s right to nondiscrimination on the basis of birth, including reproductive circumstances and genetic features.

The first right builds on CRC’s preamble and Part I, Article 7, but with greater focus and legal power. It could address children’s welfare rights worldwide, prompting national and international safety nets to protect parentless, loveless or stateless children, genetically modified or not. It might be used to regulate the current international Wild West of reproductive medicine (including artificial reproductive technology, genome modification, surrogacy and gamete donation) by prioritizing children’s fundamental interest in having a loving family environment and the right “to know” parents (biological or social).

Building upon Part I, Articles 2 and 7 of the CRC, the second right clarifies that nondiscrimination on the basis of “birth, disability, or other status” covers all circumstances of reproduction and all genetic features. Together, this pair of rights could expand child welfare and nondiscrimination laws and policies, nationally and internationally, to protect all children from the inequality, conflict and injustice imagined in “Gattaca.”

Eileen Hunt Botting (@BottingHunt) is a professor of political science at the University of Notre Dame and author of “Mary Shelley and the Rights of the Child: Political Philosophy in ‘Frankenstein’ ” (University of Pennsylvania Press, 2017).