Wednesday, 16 Jan 2019
Business

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


He Jiankui, a Chinese researcher, spoke at a conference on human genome editing in Hong Kong in November and claimed to 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 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 been just a routine peer-review criticism.

What shocked the scientific community that he said that he had learned all about embryos and implanted genome-edited embryos in the womb for the purpose of reproduction.

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 could successfully prevent transmitting HIV without genetic engineering.

What's more, according to the New York Times, "Dr. He said that one of the twins, both copies of the CCR5 were limited, but only in the other twin, only one copy was. "This left the second twin vulnerable to HIV – and the control for the twin with both copies disabled.

Researcher Maria Jasin of the Sloan Kettering Memorial Cancer Center pointed out that this experiment could 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 their relationship 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 sound, or the sound of his parents having unprotected sex? The audience does not 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" These are the methods that are used to reduce the risk of discrimination. 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 be unintentionally demonize the children made by the experiment, rather than holding accountable to the rogue scientist behind it.

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

In July 2018, the Nuffield Bioethics Council pointed out that there is no such thing as "no international treaty of general application" for the "direct" regulation of the human genome or its modification. It is called "International Council for Europe" and "International Human Rights Institutions" as the Council of Europe and UNESCO "to foster robust public discussion and international governance for genome editing. It is recommended that governments create an "international Declaration" affirming that "people whose genetics have been edited should be entitled to the full enjoyment of human rights."

Why does this matter? Since 1997, 50 to 100 children have been known to be genetically modified in the germ line, through various techniques involving three-person in vitro fertilization or mitochondrial replacement therapy. Regardless of whether the claim has been made in China, it has been heritably altered 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, "in the atmosphere of happiness, love and understanding." Part I, Article 2 specifies nondiscrimination rights, including rights to nondiscrimination to "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 modified

  1. Children's right to share with parents or fitting substitutes.
  2. Children's right to nondiscrimination on the basis of birth, including reproductive 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 worldwide, national and international safety nets to protect parentless, loveless or stateless children, genetically modified or not. It may be used to regulate the international Wild West world of reproductive medicine (including artificial reproductive technology, genome modification, surrogacy and gamete donation) by prioritizing children's fundamentals. 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 peer of laws and policies, nationally and internationally, to protect all children from 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).

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