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如何防止基因编辑婴儿事件重演?
How to Stop Rogue Gene-Editing of Human Embryos?

来源:纽约时报    2019-01-25 06:30



         A year ago, Dr. Matthew Porteus, a genetics researcher at Stanford, received an out-of-the-blue email from a young Chinese scientist, asking to meet.        一年前,斯坦福大学的遗传学研究员马修·波特斯(Matthew Porteus)博士突然收到了一位年轻中国科学家的来函,要求与他见面。
        A few weeks later, the scientist, He Jiankui, arrived in his office and dropped a bombshell. He said he had approval from a Chinese ethics board to create pregnancies using human embryos that he had genetically edited, a type of experiment that had never been carried out before and is illegal in many countries.        几周后,这位名叫贺建奎的科学家来到他的办公室,抛出一个惊人的消息。他说,他已获得中国一个伦理委员会的批准,可以将经他进行基因编辑的人类胚胎用于妊娠,这是一种以前从未进行过的实验,在许多国家都是非法的。
        “I spent probably 40 minutes or so telling him in no uncertain terms how wrong that was, how reckless,” Dr. Porteus said in a recent interview.        “我花了大约40分钟,用十分明确的语言来告诉他,这种做法是多么错误,多么鲁莽,”波特斯在最近的一次采访中说。
        Dr. Porteus did not report Dr. He’s intentions to anyone, because he thought he’d talked him out of it and it wasn’t clear where to report the plans of a scientist in China. Neither did two other American scientists Dr. He confided in.        波特斯并没有将贺建奎的意图告诉任何人,因为他认为自己已经说服贺不再这么做,并且他也不清楚该如何举报一名中国科学家的计划。得到贺建奎透露信息的其他两位美国科学家也没有将这件事告诉任何人。
        Now, nearly two months after Dr. He shook the scientific world by announcing he had created the first genetically edited babies — twins, born in November — the world’s major science and medical institutions are urgently trying to come up with international safeguards to keep such rogue experiments from happening again.        现在,在贺建奎宣布创造首例基因编辑婴儿——一对于11月出生的双胞胎——并震惊科学界近两个月后,世界上的主要科学和医学机构都迫切地试图出台国际保障措施来防止这样任意妄为的实验再次发生。
        But while scientists around the world agree the nightmare scenario must be stopped, they disagree about how to do it. Even inventors of Crispr, the gene-editing tool Dr. He used, differ on the best approach.        然而,虽然全世界的科学家都同意这种恐怖景象必须加以制止,但在如何制止上却意见不一。即便是贺建奎所使用的基因编辑工具Crispr的发明者们,在怎样才是最佳方法的问题上都有不同看法。
        Some scientists want a yearslong moratorium on creating pregnancies with gene-edited human embryos. Others say a moratorium would be too restrictive, or unenforceable. Some think scientific journals should agree not to publish embryo-editing research. Others consider that misguided or ineffective.        一些科学家希望颁布持续数年的暂止禁令来制止将经基因编辑的人类胚胎用于妊娠。另一些认为禁令限制性过强,或者不可执行。一些认为,科学期刊应该同意不发表胚胎编辑研究。另一些人则认为那是具有误导性的,或者是徒劳的。
        But most agree major health and science institutions should act quickly. The World Health Organization is assembling a panel to develop global standards for governments to follow. Leaders of the National Academy of Medicine and the National Academy of Sciences in the United States, along with the Chinese Academy of Sciences, have jointly proposed a commission with academies in other countries to develop criteria so scientists can’t “seek out convenient locales for conducting dangerous and unethical experimentation.” The proposal included establishing “an international mechanism that would enable scientists to raise concerns.” The World Economic Forum in Davos has scheduled a discussion of the issue on Thursday. Enforcement would need to be done by individual countries, many of which already have relevant laws and regulations. But global standards set by scientists could give countries a big push.        但多数人同意,主要的健康和科学机构应迅速采取行动。世界卫生组织正在召集小组讨论会,制定全球标准供各国政府遵循。美国国家医学院(National Academy of Medicine)和美国国家科学院(National Academy of Sciences)的负责人已联合提议,与其他国家的学术机构成立委员会,制定标准,这样科学家就无法“寻找方便的地点开展危险、不符合伦理的实验”。该提议包括建立“一项国际机制,使科学家能够提出他们的担忧”。周四,达沃斯的世界经济论坛安排了该议题的讨论环节。执行将需要各个国家去做,许多国家已经有相关的法律法规。但由科学家制定的全球标准可以给各国一个有力的推动。
        The fear isn’t just that genetically-edited babies could develop unintended health problems that could be inherited by subsequent generations, or that there could be attempts to produce designer babies, genetically altered for physical features, intelligence or athletic prowess.担忧不只在于基因编辑婴儿会导致意想不到的健康问题,还可能遗传给后代,或可能会有人企图生育经过设计的婴儿,通过基因改变获得身体特征、智力或运动能力。        
        Rice is investigating. Lawyers for Dr. Deem, who also told the A.P. he had “a small stake” in Dr. He’s genomics companies, said: “Michael does not do human research and he did not do human research on this project.”        莱斯大学正在展开调查。迪恩的律师也曾告诉美联社,他在贺建奎的基因组学公司里有“少数股权”,他说:“迈克尔不做人类研究,他也没有做这个项目的人类研究。”
        Dr. He and Dr. Deem haven’t responded to emails from The New York Times. A Rice spokesman declined to offer any information on the university’s investigation.        贺建奎和迪恩尚未回复《纽约时报》的邮件。莱斯大学发言人拒绝提供关于调查的任何信息。
        Dr. He, who is in his mid-30s, went public about his work in a video announcement in November, after it was revealed by MIT Technology Review just before a conference on genome editing in Hong Kong.        《麻省理工科技评论》(MIT Technology Review)在香港举行的一场基因组编辑大会召开前披露了此事,而后年龄在35岁上下的贺建奎于11月通过一则视频声明对外公布了他的研究。
        “I was just horrified; I felt kind of physically sick,” said Jennifer Doudna, a Crispr inventor, who first learned what Dr. He had done when he emailed her on Thanksgiving with the subject line “Babies Born."        “我被吓坏了,能感到某种身体上的不适,”Crispr发明者之一詹妮弗·达奥纳(Jennifer Doudna)说。贺建奎在感恩节发给过她一封题为“婴儿已出生”的邮件,这是她第一次得知他在做什么。
        Dr. He said he had disabled a gene in the embryos that allows people to become infected with H.I.V., something medically unnecessary because simpler and safer ways exist for preventing H.I.V.        贺建奎说,他使胚胎中一个会让人感染HIV的基因失了效,但这在医学上是没有必要的,因为预防HIV还有更简便、更安全的方式。
        Data he presented suggests the editing might have caused unintended genetic alterations with unknown health implications. There are serious doubts that Dr. He, who said he also created a second pregnancy that Chinese authorities said is still underway, ensured the babies’ parents understood the risks of the editing.        他给出的数据表明,基因编辑无意间可能已导致带有未知健康问题的基因转变。对于贺建奎是否确保婴儿父母理解了基因编辑的风险,仍存在很大怀疑。他说他还完成了第二个妊娠,对此中国当局表示尚在进行中。
        Dr. Porteus says he now wishes he’d consulted with colleagues after he learned about Dr. He’s plans and emailed a senior Chinese ethicist while Dr. He was in his office.        波特斯称,他现在觉得自己当初在了解到贺建奎的计划后应该和同事们商议,并在他仍在自己办公室时,就写封邮件给中国的一位资深伦理学家。
        Another American Dr. He spoke to, Dr. William Hurlbut, a Stanford ethics professor, said he expressed strong opposition to the work in discussions with Dr. He in 2017 and 2018, warning him that, among other things, “‘This could hurt you, this could humiliate you.’”        另一位与贺建奎交谈过的美国人、斯坦福大学伦理学教授威廉·赫尔伯特(William Hurlbut)博士说,2017至2018年,他曾在与贺的讨论中对他的工作表示过强烈反对,包括警告他“‘这会害了你,会让你蒙羞。’”
        As of last October, Dr. Hurlbut said, “I was personally convinced that he had either implanted or had live births.”        赫尔伯特说,截止去年10月,“我个人确信他要么已经植入,要么已经有了活产儿。”
        He said he didn’t notify anyone because “I decided it wasn’t like I knew somebody was going to murder somebody; it was a fait accompli. I didn’t feel like there was either any moral obligation or practical benefit to my raising it.”        他说他没有告知任何人,因为“当时我的想法是,这又不是说我知道某人要去杀人了;这是个既成事实。我没觉得自己有任何道德义务或实际的好处要去把这件事说出来。”
        Mark DeWitt at University of California, Berkeley, declined to be interviewed, but has said he also tried to dissuade Dr. He.        加州大学伯克利分校的马克·德威特(Mark DeWitt)拒绝接受采访,但他说他也曾试图劝阻贺建奎。
        All three American scientists noted Dr. He spoke to them expecting confidentiality, which is how scientists commonly share preliminary research.        所有三位美国科学家都指出,贺建奎告知他们时期望他们能保密,这也是科学家通常分享初步研究的方式。
        If Dr. He had been working through American universities or funding institutions, scientists could have alerted those, said Dr. Francis Collins, director of the National Institutes of Health, which doesn’t fund human embryo editing. China’s system is so complex that American scientists might not know “exactly what kind of alarm bells they should be ringing and who they should be ringing them to,” he said.        美国国家卫生研究院(National Institutes of Health)院长弗朗西斯·柯林斯(Francis Collins)博士说,如果贺建奎是在美国的大学或资助机构完成工作,科学家们可能已经就此事发出了警报。他所在的这个机构不资助人类胚胎编辑研究。中国的体制太过复杂,美国科学家可能不了解“究竟他们该敲响什么样的警钟,该向谁敲响警钟,”他说。
        Efforts to come up with a coordinated international response gained momentum this week when Chinese authorities, often perceived to be more laissez-faire about reining in unorthodox scientific experiments, indicated that an initial government investigation found that Dr. He “seriously violated” state regulations, according to Chinese state media.        一般认为中国当局对遏制非正统的科学实验更多是持自由放任态度,而在据中国国有媒体报道,当局表明政府初步调查发现贺建奎“严重违反”了国家有关规定后,国际社会开始加紧行动,就此事给出一个协调一致的对策。
        The findings — that he forged ethics documents, used unsafe and ineffective gene-editing methods and intentionally evaded supervision — suggest that he could face criminal charges. Dr. He’s academic home, Southern University of Science and Technology in Shenzhen, rescinded his contract.        调查结果——即他伪造了伦理文书,使用了安全性、有效性不确切的基因编辑方法,有意逃避监管——表明他可能面临刑事指控。贺建奎的学术单位深圳南方科技大学解除了他的聘用合同。
        “It is clear that the Chinese government is taking this issue seriously,” said Dr. Victor Dzau, president of the National Academy of Medicine in Washington.        “显然,中国政府在严肃对待这件事情,”华盛顿的国家医学科学院院长曹文凯(Victor Dzau)博士说。
        Initially it was unknown whether Dr. He would face consequences. In recent years, China has invested millions aiming to become a scientific powerhouse, including money to lure back to China scientists like Dr. He, who did doctoral and postdoctoral work in the United States. Eye-popping experiments, like a proposal to transplant a head to another body, have not been discouraged.        贺建奎是否会遭到处罚,在一开始是不明朗的。近年来,中国大举投资,旨在成为科技大国,包括出资吸引贺建奎这样的科学家回到中国,他在美国完成了博士和博士后工作。一些令人大为震惊的实验,如将头部移植给另一个身体的想法,并未被阻拦。
        “It was vital for this dangerous and unwarranted work to be officially acknowledged and deemed illegal,” said Dr. Doudna after the announcement of the preliminary findings. “This announcement confirms an international ‘red line’ of ethical and scientific conduct to help ensure that this type of radical, medically unnecessary and negligent work does not happen again.”        “这种危险且无正当理由的研究,一定要得到正式承认并被判定为非法,”在初步结果公布后,达奥纳说。“这一公布确认了一道伦理和科学行为的国际‘红线’,以帮助确保这类激进的、无医学必要性的、疏于管束的研究不再发生。”
        While under investigation, Dr. He has been in faculty housing, able to roam campus, go to the gym and communicate with some Western scientists. Dr. Hurlbut has spoken to him by phone and email and said that in those conversations, Dr. He had sounded “hopeful that he can have a contributory future.”        在接受调查期间,贺建奎一直住在职工宿舍,能够在校园走动,去健身房,并与一些西方的科学家沟通。赫尔伯特已和他通过电话和邮件,他说在那些谈话中,贺听起来“对自己将来能有所贡献仍抱有希望”。
        Asked if Dr. He, who initially said he was “proud” of what he had done, had expressed regret, Dr. Hurlbut replied: “He really regrets the way it was revealed to the world, the timing.”        贺建奎起初说过,他对自己所做之事感到“自豪”,在被问及是否表达过悔意时,赫尔伯特回复道:“他对这件事披露给世界的方式和时机真的感到后悔。”
        Dr. He also recently emailed a British geneticist, Robin Lovell-Badge, saying: “I fully agree that ‘scientists should draw up a clear set of dos and don’ts for those who want to perform human gene editing.’”        贺建奎近期还给英国遗传学家罗宾·洛维尔-巴奇(Robin Lovell-Badge)发过邮件,称:“我完全同意,‘对于那些想开展人类基因编辑的人,科学家应该划分出一套明确的‘该做’和‘不该做’的事项准则。’”
        At least one major journal decided against publishing Dr. He’s research before the Hong Kong announcement, and scientists have debated whether it should be published.        至少有一份重要期刊在香港的声明之前就决定不发表贺建奎的研究,科学家们也在就是否要发表展开争论。
        Dr. Porteus said he initially thought it should be posted on a forum that accepts early, not-yet-peer-reviewed research because “we could go through it with a fine tooth comb so we understand every detail.” But now, he said, “I don’t even think that would be appropriate. It’s so out of bounds, it can’t be given any stamp of approval.”        波特斯说,他最初认为,应该把它贴在一个接受未经同行评审的早期研究的论坛上,因为“我们可以进行一次彻底的梳理,以便了解每一个细节。”但现在,他说,“我不再认为这样做是合适的。这种行为太过分了,不能获得任何形式的认可。”
        Although Dr. He has said his motivation was protecting people from H.I.V., he also clearly wanted leading scientists’ approval. Several months before the twins’ birth, he asked to visit Feng Zhang, another Crispr inventor. At Dr. Zhang’s Broad Institute lab in Boston, Dr. He showed data from his gene-editing of human embryos in laboratory dishes, which didn’t alarm Dr. Zhang because it had already been done by several scientists. But Dr. Zhang sharply criticized “big problems” with Dr. He’s gene-editing results.        尽管贺建奎说他的动机是保护人们不感染艾滋病毒,显然他也希望得到权威科学家的认可。在这对双胞胎出生前的几个月,他要求会见Crispr的另一位发明者张锋。在张锋位于波士顿博德研究所(Broad Institute)的实验室,贺建奎展示了他在实验室培养皿中对人类胚胎进行基因编辑时获得的数据,这并没有让张锋感到警觉,因为已经有几位科学家这么做了。但张锋尖锐地批评了贺建奎的基因编辑结果中的“大问题”。
        Dr. He didn’t say anything about implanting embryos. “Maybe I shouldn’t have been so critical and he would have revealed more,” Dr. Zhang said.        贺建奎完全没有提及植入胚胎的事情。“也许我不应该挑那么多毛病,这样他就会透露更多信息,”张锋说。
        Some experts say the best way to block misguided uses of embryo editing is coordinated action by all public and private players involved in new scientific technologies, including regulatory agencies, patent offices, funding organizations and liability insurers. In a recent New England Journal of Medicine article, R. Alta Charo, a bioethicist at University of Wisconsin-Madison, recommended a “comprehensive ecosystem of public and private entities that can restrain the rogues among us.”
        一些专家说,阻止错误使用胚胎编辑的最佳方法是由所有新科学技术的公共和私人参与者协调行动,包括监管机构、专利局、资助组织和责任保险公司。威斯康星大学麦迪逊分校(University of Wisconsin-Madison)的生物伦理学家R·奥塔·查洛(R. Alta Charo)最近在《新英格兰医学杂志》(New England Journal of Medicine)上发表的文章中提议,建立一个“由公共和私人实体组成的综合生态系统,可以约束我们当中的任意妄为者”。
        The first step may be an international commission, led by the American academies of science and medicine, which many countries have now agreed to form, said Dr. Dzau, the academy of medicine president. It would produce a report this year setting detailed guidelines.        第一步可能是成立一个由美国科学与医学研究院牵头的国际委员会。美国国家医学科学院院长曹文凯说,许多国家现在已经同意成立这个委员会。它将在今年发布一份报告,制定详细的指导方针。
        Current standards, reflected in a 2017 National Academies report, say edited embryos should only be used in human pregnancies to prevent or treat “serious diseases or disabilities” with no “reasonable alternative” treatment. Dr. Dzau wants more specifics, like which diseases are dire enough to justify the risks, which risks are acceptable, and how much preliminary testing is required.        目前的标准反映在2017年美国国家科学院的一份报告中,称只有在预防或治疗“严重疾病或残疾”,且没有“合理替代方案”时,才可以将经过编辑的胚胎用于人类妊娠。曹文凯希望更加细化,比如哪些疾病严重到足以证明风险是合理的,哪些风险是可以接受的,以及需要多少初步测试。
        He said the commission might recommend a moratorium on implanting edited human embryos until it issues its report. Some leading scientists want a longer hiatus.        他说,委员会可能会建议对植入编辑过的人类胚胎的行为实施暂止禁令,直到报告得以发表。一些顶尖科学家希望有更长的暂止期。
        Dr. Zhang said a five-year moratorium would allow for necessary public discussion.        张锋说,五年的暂止禁令将允许科学家展开必要的公开讨论。
        Dr. Doudna disagrees and instead supports developing “very strict international criteria” and getting journals “to say they will not publish work like this.”        达奥纳不同意这种观点,她支持制定“非常严格的国际标准”,让期刊“声明它们不会发表这样的作品”。
        She’s been jousting over email with the N.I.H’s Dr. Collins, who leans toward a moratorium.        她一直在和美国国家卫生研究院的柯林斯在电子邮件中争吵,后者倾向于暂禁。
        “If you use the m-word, it has a little more clout,” Dr. Collins said, noting that international agreement would be required to lift it, discouraging individual countries from deciding, “‘We think it’s O.K. now.’”        “如果你使用‘暂禁’这么严重的字眼,它的影响力就会大一些,”柯林斯说。他指出,要想实现它,就需要达成国际协议,打消个别国家那种“我们觉得现在没问题了”的念头。
                
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