Lulu and Nana

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Lulu and Nana (pseudonyms)
Bornca. November 2018
China
NationalityChinese
Parent(s)Grace and Mark (pseudonyms)[1]

Lulu (Chinese: 露露) and Nana (Chinese: 娜娜) are pseudonyms for twin Chinese girls born in November 2018, who, according to the researcher, He Jiankui, are the world's first germline genetically edited babies.[2] He said the girls were born healthy,[3] The girls' parents were participants in a clinical trial run by He, in which He offered standard in vitro fertilization services and in addition, used CRISPR-Cas9, a technology that can modify DNA, to modify the CCR5 gene in the embryos that were generated, to attempt to confer genetic resistance to the HIV virus.[1] The clinical trial was conducted secretly until November 2018.

The reaction to He's actions was widespread criticism,[4] and included concern for the well-being of the girls.[1][5][6] Near the end of November, Chinese authorities suspended all He's research activities.[7]

Announcement[edit]

He announced his project involving Lulu and Nana in an interview with the news agency Associated Press on 19 November 2018, the eve of the Second International Summit on Human Genome Editing at the University of Hong Kong. The project had received no independent confirmation and had not been peer reviewed or published in a scientific journal.[1][2][5][6]

Soon after He's revelation, his university the Southern University of Science and Technology (SUSTech) stated He's research was conducted outside of their campus, and they were unaware of the research project and its nature.[8] China’s National Health Commission also ordered provincial health officials to investigate He's case.[1]

Origins[edit]

The embryos that became Lulu and Nana were generated during a clinical trial run by He of the Southern University of Science and Technology in Shenzhen, while he was on leave from the university and working through Shenzhen Harmonicare Women’s and Children’s Hospital.[9] The trial had recruited couples who wanted to have children; in order to participate, the man had to be HIV-positive and the woman, uninfected.[9] The couples were recruited through a Beijing-based AIDS advocacy group called Baihualin.[9] He kept the clinical trial secret from the scientific community, and, as of 28 November, it was unclear whether the participants had given truly informed consent.[3][10]

He, the researcher, took sperm and eggs from the couples, performed in vitro fertilization with them, and then edited the genomes of the embryos using CRISPR/Cas9.[9] The editing targeted a gene, CCR5, that codes for a protein that HIV uses to enter cells.[10][11] He was trying to create a specific mutation in the gene, (CCR5 Δ32), that few people naturally have — that possibly confers innate resistance to HIV,[10] as seen in the case of the Berlin Patient.[12] He said that the girls still carried functional copies of CCR5 along with disabled CCR5 given mosaicism inherent in the present state of the art in germ-line editing.[13] There are forms of HIV that use a different receptor instead of CCR5, and the work that He did could not protect Lulu and Nana from those forms of HIV.[10]

He used a preimplantation genetic diagnosis process on the embryos that were edited, where three to five single cells were removed and fully sequenced, to identify chimerism and off-target errors. He says that during the pregnancy, cell-free fetal DNA was fully sequenced to check for off-target errors, and the mother was offered amniocentesis to check for problems with the pregnancy, but she declined.[10] The children were born in late October or early November; He said that they appeared to be healthy.[3] When they were born, it was unclear if there might be long-term effects from the gene-editing; He was asked about his plans to monitor the children, and pay for their care should any problems arise, and how their confidentiality and that of their parents could remain protected.[3]

On November 25, 2018 MIT Technology Review published a story about the work, based on documents that had been posted earlier that month on the Chinese clinical trials registry.[5] After that story was posted, He released a promotional video on YouTube and the next day, the Associated Press published an interview with He.[5][9] He had engaged a public relations firm as well.[14] He eventually presented the work that led to the birth of the girls on November 27 at the International Human Genome Editing Summit.[3]

Reactions[edit]

He did not disclose the parents' names and they did not make themselves available to be interviewed, so their reaction is not known.[9] There was widespread criticism in the media and scientific community over the conduct of the clinical trial and its secrecy, [4] and concerns raised for the long term wellbeing of Lulu and Nana.[3][6] In the United States, Michael W. Deem, a bioengineering professor at Rice University, and He's doctoral advisor, was involved in the research, and was present when people involved in He's study gave consent.[9] Deem came under investigation by Rice after news of the work was made public.[15] A series of investigations were opened by He's university, local authorities, and the Chinese government.

On 29 November 2018, Chinese authorities suspended all of He's research activities, saying his work was "extremely abominable in nature" and a violation of Chinese law.[7]

See also[edit]

References[edit]

  1. ^ a b c d e Reuters (26 November 2018). "China Orders Investigation After Scientist Claims First Gene-Edited Babies". The New York Times. Archived from the original on 27 November 2018. Retrieved 26 November 2018.
  2. ^ a b Begley, Sharon (26 November 2018). "Claim of CRISPR'd baby girls stuns genome editing summit". Stat News. Archived from the original on 27 November 2018. Retrieved 26 November 2018.
  3. ^ a b c d e f Begley, Sharon (28 November 2018). "Amid uproar, Chinese scientist defends creating gene-edited babies - STAT". STAT.
  4. ^ a b Kolata, Gina; Belluck, Pam (5 December 2018). "Why Are Scientists So Upset About the First Crispr Babies? - Only because a rogue researcher defied myriad scientific and ethical norms and guidelines. We break it down". The New York Times. Retrieved 5 December 2018.
  5. ^ a b c d Regalado, Antonio (25 November 2018). "Exclusive: Chinese scientists are creating CRISPR babies - A daring effort is under way to create the first children whose DNA has been tailored using gene editing". MIT Technology Review. Archived from the original on 27 November 2018. Retrieved 26 November 2018.
  6. ^ a b c Cyranoski, David (27 November 2018). "How the genome-edited babies revelation will affect research - Some scientists worry the startling claim will lead to knee-jerk regulations and damage the public's trust in gene editing". Nature. Archived from the original on 27 November 2018. Retrieved 27 November 2018.
  7. ^ a b Jiang, Steven; Regan, Helen; Berlinger, Joshua (29 November 2018). "China suspends scientists who claim to have produced first gene-edited babies". CNN News. Retrieved 29 November 2018.
  8. ^ Staff (26 November 2018). "Southern University of Science and Technology Statement On the Genetic Editing of Human Embryos Conducted by Dr. Jiankui HE - In the Focus - SUSTC". Southern University of Science and Technology (in Chinese). Archived from the original on 27 November 2018. Retrieved 27 November 2018.
  9. ^ a b c d e f g Marchione, Marilyn (26 November 2018). "Chinese researcher claims first gene-edited babies". AP NEWS.
  10. ^ a b c d e Belluck, Pam (28 November 2018). "Chinese Scientist Who Says He Edited Babies' Genes Defends His Work". The New York Times. Retrieved 29 November 2018.
  11. ^ de Silva E, Stumpf MP (Dec 2004). "HIV and the CCR5-Delta32 resistance allele". FEMS Microbiology Letters. 241 (1): 1–12. doi:10.1016/j.femsle.2004.09.040. PMID 15556703.
  12. ^ "«Menschenversuche»: Geburt genmanipulierter Babys verkündet". Stern (in German). 26 November 2018.
  13. ^ Begley, Sharon (28 November 2018). "Amid uproar, Chinese scientist defends creating gene-edited babies - STAT". STAT.
  14. ^ Joseph, Andrew; Robbins, Rebecca; Begley, Sharon (27 November 2018). "An outsider claimed genome-editing history; the world snapped to attention". STAT.
  15. ^ LaMotte, Sandee (27 November 2018). "Rice professor under investigation for role in 'world's first gene-edited babies'". CNN News. Archived from the original on 27 November 2018. Retrieved 27 November 2018.

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