Professionalism/He Jiankui and Designer Babies

He Jiankui and Designer Babies Background on He Jiankui He Jiankui is a Chinese biophysics researcher who studied at Rice University for his PhD and taught at Southern University of Science and Technology in China.The untold story of the ‘circle of trust' behind the world's first gene-edited babies https://www.science.org/content/article/untold-story-circle-trust-behind-world-s-first-gene-edited-babies 2023-05-09 www.science.org en He founded the company Direct Genomics in 2012, which developed single molecule sequencing devices.The businesses behind the doctor who manipulated baby DNA https://asia.nikkei.com/Business/Technology/The-businesses-behind-the-doctor-who-manipulated-baby-DNA 2023-05-09 Nikkei Asia en-GB In 2018, He Jiankui claimed to have created the first gene-edited twins "Lula and Nina" and a baby named "Amy". He recruited couples in which the father had HIV and through in vitro fertilization, edited the genomes of embryos to be protected from HIV later in life.Kolata Gina Wee Sui-Lee Belluck Pam 2018-11-26 Chinese Scientist Claims to Use Crispr to Make First Genetically Edited Babies en-US The New York Times https://www.nytimes.com/2018/11/26/health/gene-editing-babies-china.html 2023-05-09 0362-4331 Background on CRISPR CRISPR is highly efficient, relatively easy to use, and has revolutionized the field of genetic engineering. It has the potential to treat and cure a wide range of genetic diseases, improve crop yields, and enhance our understanding of genetics and biology. First, scientists design a guide RNA molecule that matches the target DNA sequence they want to edit. This guide RNA molecule then binds to the Cas9 protein, which acts as scissors, cutting the DNA at the precise location where the guide RNA has bound.Horodecka Katarzyna Düchler Markus 2021-06-04 CRISPR/Cas9: Principle, Applications, and Delivery through Extracellular Vesicles https://www.mdpi.com/1422-0067/22/11/6072 International Journal of Molecular Sciences en 22 11 6072 10.3390/ijms22116072 1422-0067 PMC8200053 34199901 Once the DNA has been cut, scientists can then introduce a new DNA sequence into the cell, which the cell uses as a template to repair the break in the DNA. This process can be used to either insert or delete specific genes or to correct genetic mutations that cause diseases. Guidelines and Regulations Starting in 2015, industry groups began releasing statements regarding the ethical implications of genetic modifications of embryos. The U.C. Berkeley Institute for Genome Innovation "strongly discourage[d]…any attempts at germline genome modification" Baltimore David Berg Paul Botchan Michael Carroll Dana Charo R. Alta Church George Corn Jacob E. Daley George Q. Doudna Jennifer A. Fenner Marsha Greely Henry T. Jinek Martin Martin G. Steven Penhoet Edward Puck Jennifer 2015-04-03 A prudent path forward for genomic engineering and germline gene modification https://www.science.org/doi/10.1126/science.aab1028 Science en 348 6230 36–38 10.1126/science.aab1028 0036-8075 PMC4394183 25791083 and the International Summit on Human Gene Editing said "it would be irresponsible...until the relevant safety and efficacy issues have been resolved...and there is broad societal consensus".Organizing Committee for the International Summit on Human Gene Editing. (2015). On Human Gene Editing: International Summit Statement. https://www.nationalacademies.org/news/2015/12/on-human-gene-editing-international-summit-statement In 2017, the National Academy of Science and the National Academy of Medicine released the official position of the US Academies, stating that genome modification should only occur with a clear regulatory framework.Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations. (2017). Human Genome Editing: Science, Ethics, and Governance. https://www.ncbi.nlm.nih.gov/books/NBK447260/ They recommended that genetic editing be restricted to preventing a serious disease or condition, restricted to converting genes to versions that are prevalent in the population, and take place with "ongoing, rigorous oversight" and "maximum transparency". Beyond industry guidelines, many countries have implemented laws that ban clinical trials of genome editing in embryos. As of 2020, no country allows for the genetic modification of embryos in pregnant women, through either explicit or de facto bans.Baylis Françoise Darnovsky Marcy Hasson Katie Krahn Timothy M. 2020-10-01 Human Germline and Heritable Genome Editing: The Global Policy Landscape https://www.liebertpub.com/doi/10.1089/crispr.2020.0082 The CRISPR Journal en 3 5 365–377 10.1089/crispr.2020.0082 2573-1599 However, at the time of He's experiment, the regulations surrounding genetic modification research in China were dubious at best, and did not explicitly prohibit clinical studies of this kind.Greely Henry T 2019-10-25 CRISPR’d babies: human germline genome editing in the ‘He Jiankui affair’* https://academic.oup.com/jlb/article/6/1/111/5549624 Journal of Law and the Biosciences en 6 1 111–183 10.1093/jlb/lsz010 2053-9711 PMC6813942 31666967 Additionally, the regulatory environment surrounding research in China is relatively new, making it easy for He Jiankui to avoid any oversight from both industry and governmental agencies. Regardless of the lack of robust legislation on genetic modification, He blatantly violated a number of other ethical and legal restrictions in order to carry out his experiment covertly. He forged documents to get medical approval, fabricated a fake ethical review certificate, and misled doctors "misled doctors into unknowingly implanting gene-edited embryos into two women."Chinese scientist who produced genetically altered babies sentenced to 3 years in jail https://www.science.org/content/article/chinese-scientist-who-produced-genetically-altered-babies-sentenced-3-years-jail 2023-05-08 www.science.org en In the years since He's research, China has passed new regulations restricting genome editingChina tightens its regulation of some human gene editing, labeling it ‘high-risk' https://www.science.org/content/article/china-tightens-its-regulation-some-human-gene-editing-labeling-it-high-risk 2023-05-08 www.science.org en and created a new national medical ethics committee to oversee future genetic experiments.Qiu Jane 2019-03-05 China creating national medical ethics committee to oversee high-risk clinical trials https://www.statnews.com/2019/03/05/china-creating-national-medical-ethics-committee/ 2023-05-08 STAT en-US Controversy In China, the government immediately launched an investigation into the experiment, and in January 2019, He Jiankui was fired from his position at the Southern University of Science and Technology in Shenzhen. The Chinese government also issued a statement condemning the experiment, stating that the researchers had "violated China's laws and regulations, breached the morality and ethics of academia, and damaged China's international reputation in the field of science and technology." While the babies' parents were aware of the gene editing, He broke Chinese laws by forging Chinese documents. In December 2019, He Jiankui was sentenced to three years in prison and fined three million yuan (approximately $430,000) by a Chinese court for his involvement in the experiment. Two of his colleagues, Zhang Renli and Qin Jinzhou, were also sentenced to prison and fined. Media Response There was immediate outcry from many people in the industry against He's actions. The NIH, Chinese Academy of Medical Science, WHO, and countless other bioethicists, geneticists, and other biomedical researchers all strongly condemned He Jiankui and his experiments.2018-11-28 Statement on Claim of First Gene-Edited Babies by Chinese Researcher https://www.nih.gov/about-nih/who-we-are/nih-director/statements/statement-claim-first-gene-edited-babies-chinese-researcher 2023-05-09 National Institutes of Health (NIH) ENWang Chen Zhai Xiaomei Zhang Xinqing Li Limin Wang Jianwei Liu De-pei December 3, 2018 Gene-edited babies: Chinese Academy of Medical Sciences’ response and action https://linkinghub.elsevier.com/retrieve/pii/S0140673618330800 The Lancet en 393 10166 25–26 10.1016/S0140-6736(18)33080-0Molteni Megan The World Health Organization Says No More Gene-Edited Babies en-US Wired https://www.wired.com/story/the-world-health-organization-says-no-more-gene-edited-babies/ 2023-05-09 1059-1028 A documentary called "Make People Better" about the activities of He Jiankui and his relations with the Chinese Government was released in 2022. It provided a critical perspective on He yet claims that he is part of a larger trend in China and was thrown under the bus.Conversation The 2022-12-21 ‘Make People Better’: Documentary Spurs New Look at Case of First Gene-Edited Babies https://heavy.com/news/make-people-better-gene-edited-babies-documentary/ 2023-05-09 Heavy.com en-US The National Academy of Sciences, which has been outspoken about the ethical concerns of gene-editing, tweeted in 2019 seemingly in support of using gene-editing to create designer babies with enhanced abilities beyond resistance to diseases.More Than a Misstep: The NAS Twitter Debacle Represents an Abuse of Authority https://www.geneticsandsociety.org/biopolitical-times/more-misstep-nas-twitter-debacle-represents-abuse-authority 2023-05-09 Center for Genetics and Society en He Jiankui's research has prompted much public discussion on the ethics of genetic modification and "designer babies". While most people disagree with using genome editing to make babies more intelligent, public opinion is more mixed on its use to cure diseases.Funk Cary 2018-07-26 Public Views of Gene Editing for Babies Depend on How It Would Be Used https://www.pewresearch.org/science/2018/07/26/public-views-of-gene-editing-for-babies-depend-on-how-it-would-be-used/ 2023-05-09 Pew Research Center Science & Society en-US Impact There is a lot of uncertainty surrounding the effects of the gene editing experiment. He Jiankui attempted to disable the CCR5 gene that is responsible for HIV infection, but this is far from a guarantee. This experiment he conducted is still being monitored with no concrete evidence that this gene is completely disabled. In a video released on his YouTube channel, He Jiankui said that gene editing should only be used for healing rather than enhancing IQ or physical appearances.About Lulu and Nana: Twin Girls Born Healthy After Gene Surgery As Single-Cell Embryos https://www.youtube.com/watch?v=th0vnOmFltc 2023-05-09 en Interestingly, the CCR5 gene is a suppressant of memory and brain plasticity. Disabling this gene may prevent the contraction of HIV, but it also has implications in creating highly intelligent babies.China’s CRISPR twins might have had their brains inadvertently enhanced https://www.technologyreview.com/2019/02/21/137309/the-crispr-twins-had-their-brains-altered/ 2023-05-09 MIT Technology Review en There are loads of possible consequences these babies can face from higher risk of West Nile Virus and severe flu to cancer.Stein Rob June 3, 2019 2 Chinese Babies With Edited Genes May Face Higher Risk Of Premature Death https://www.npr.org/sections/health-shots/2019/06/03/727957768/2-chinese-babies-with-edited-genes-may-face-higher-risk-of-premature-death NPR The impact on babies "Lula and Nina" it yet to be seen, but this experiment has launched a heated debate between scientists over the use of CRISPR-Cas9. Conclusion He Jiankui's actions have been almost universally denounced by researchers and governments around the world, and he paid the price when he was sentenced to prison. However, in 2022, He was released from prisonThe creator of the CRISPR babies has been released from a Chinese prison https://www.technologyreview.com/2022/04/04/1048829/he-jiankui-prison-free-crispr-babies/ 2023-05-08 MIT Technology Review en and is already attempting to raise money to perform new experiments, this time working to "develop affordable gene therapies for rare diseases." The man who claimed he genetically engineered babies just got out of a Chinese prison for practicing without a license and he's eyeing a comeback https://fortune.com/well/2023/02/28/gene-edited-babies-scientist-comeback/ 2023-05-08 Fortune Well en To this day, He has never apologized for his actions or experiments. The only regret He has expressed is that he "did it too quickly."Devlin Hannah correspondent Hannah Devlin Science 2023-02-04 Scientist who edited babies’ genes says he acted ‘too quickly’ en-GB The Guardian https://www.theguardian.com/science/2023/feb/04/scientist-edited-babies-genes-acted-too-quickly-he-jiankui 2023-05-08 0261-3077 While He's work brought the ethical dilemma to the forefront of public attention, it did not result in any definitive answers. Research on genome modification continues, albeit under stricter oversight than in He's experiment, and ethical debates within the industry are still ongoing.Stein Rob March 6, 2023 Experts weigh medical advances in gene-editing with ethical dilemmas https://www.npr.org/sections/health-shots/2023/03/06/1158705095/genome-summit-gene-editing-ethics-crspr NPR He Jiankui received an array of opinions for his work. In a professional sense, He should have informed others at the institute he was working with due to the fact he was using their resources and the ethical questions associated with his experiment. A question that comes into play is how will He Jiankui be viewed in 100 years? Will he be revered for his trail blazing work or continue to be condemned due to the fact that he violated the regulations and ethical guidelines of the time? References