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OPINION

Scientific ethics and gene edited babies

The scientific community needs to establish basic ethical standards before pursuing heritable human genome editing research.

Lesley Becker/Globe Staff; Adobe

Three babies, three scientists, three years in jail, and a three million yuan fine. This is the story of He Jiankui and the world’s first genome edited babies.

In November 2018, on the eve of the Second International Summit on Human Genome editing in Hong Kong, news leaked that a Chinese scientist had created genome-edited twins using CRISPR technology, which allows scientists to remove, add, or alter DNA. The news that genetically modified embryos had been used to create the twins was confirmed by He in a YouTube video and a follow-up presentation at the Hong Kong Summit. He explained that he had modified the CCR5 gene to provide the infants with resistance to HIV. During the Q&A period following his presentation, He confirmed that there was another ongoing pregnancy.

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He’s experiment was widely condemned on both scientific and ethical grounds. In China, scientists insisted the research was premature. They also feared this controversial experiment would tarnish their scientific reputation for having failed to take ethics seriously. Over a hundred Chinese scientists signed a letter condemning the CRISPR baby experiment and calling for a review of heritable human genome editing research by the scientific community and the public. The Chinese Academy of Science announced plans for a “thorough investigation.”

In China, relevant national guidance can be found in two 2003 regulations: the Ethical Principles for Human Assisted Reproductive Technology and Human Sperm Bank, and the Ethical Guiding Principles on Human Embryonic Stem Cell Research. The first of these regulations makes explicit reference to the principle of protecting future generations and stipulates that “If there is evidence that the implementation of human assisted reproductive technology will cause serious physical, psychological, and social harms to future generations, medical professionals have an obligation not to implement the technology.”

In December 2019, the Nanshan District People’s Court in Shenzhen confirmed that a third genome-edited child had been born and identified Zhang Renli and Qin Jinzhou as He’s close collaborators. All three scientists pleaded guilty to the crimes of practicing medicine without a license, violating Chinese regulations on human assisted reproductive technology, and fabricating ethical review documents. For this, each was given jail time and fines. The most serious penalties were reserved for He.

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In many respects this outcome was predictable. Scientists the world over had let it be known that they were waiting to see whether the government would investigate, if sanctions, in addition to the loss of He’s university position would be imposed, and whether improved national oversight would be introduced. On all fronts, China has obliged. There has been an investigation. There have been legal sanctions. And Administrative Regulations for the Clinical Application of New Biomedical Technologies have been drafted. These regulations stipulate that high-risk biomedical research (including research involving changes in genetic material or regulation of genetic expression) will be managed by the health authority of the State Council.

This evidence of “responsible science” is important, but we should not lose sight of the fact that China’s response involves some measure of scapegoating. Moreover, it is important to remember that He was trained in the United States. The culture of science he worked in is one that he learned on these shores. Many American scientists knew of He’s controversial work and said nothing. Matthew Porteus, head of Porteus Labs at Stanford University, said he told He, “… our culture is that you respect confidentiality and that when people reveal things in confidence to you, you respect that confidence. I’m not going to publicly discuss what you just told me because that is for you to publicly discuss.” According to He’s public relations specialist, Ryan Ferrell, there were as many as five dozen people in He’s circle of trust. This speaks to the need for an open and honest discussion about the broader cultural context in which He’s work was incentivized.

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I call on scientists to carefully reflect on what kind of world we want to live in and if heritable human genome editing research can help us build that world. The pivotal ethical question we must address is not how but whether to embrace the project of genetically altering our descendants.

In this way, the story of He Jiankui and the CRISPR-edited babies is the beginning of yet another story — a story about our future and the pursuit of social justice.

Françoise Baylis is university research professor at Dalhousie University, Halifax, Canada. She is the author of “Altered Inheritance: CRISPR and the Ethics of Human Genome Editing.”