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贺建奎——贺建奎露露娜娜2岁健康状况

11月28日,南方科技大学副教授贺建奎现身在香港举办的第二届人类基因组编辑国际峰会现场,向公众致歉,并对自己的研究过程进行披露。这也是“基因编辑婴儿”事件引起世界热议后贺建奎的首次公开露面。

(前情报道:关注“基因编辑婴儿”事件!Ethics debate rages as scientist refuses to comment)

“首先我想为基因编辑婴儿的实验结果被意外泄露致歉,”他在演讲开头提到,“我的整个实验结果,由于实验的保密性不强,所以数据被泄露了。所以我必须要在今天这个场合跟大家分享这个数据。”

贺建奎的发言总结为以下几点:

1. 校方不知情

贺建奎表示,实验结果的提前泄露完全在意料之外。关于南方科技大学对这一实验是否知情,他回应道“校方完全不知道我的这个实验,但感谢自己能有机会来进行研究。”他表示实验数据将在会议上公开,并欢迎同行进行评议。

2. 脱靶风险低 且家长完全知情、自愿

贺建奎说,实验志愿者是通过艾滋病公益机构招募的,共有八对夫妇,均为父亲HIV阳性,母亲HIV阴性。研究团队对大约30个胚胎中70%进行了基因编辑。志愿者夫妇对实验可能造成的后果完全知情,知情同意书已经在网上公开了。

其中,知情同意过程包含非正式和正式的谈话,是由团队成员和另外四位专家共同参与的,内容有参考美国医学科学院的指导意见。

在演讲中,贺建奎表示,虽然基因测序发现了一个潜在的脱靶风险,但是距离其他的基因都很远,“之前我们发现过这个问题,也告诉过婴儿的父母”。志愿者对 HIV 均有很高的了解程度,甚至带了脱靶效应的文献来提问。

目前,露露娜娜已经健康出生,“检测之后发现结果符合预期,两个基因序列得到预期效果的改善”,贺建奎说。研究团队将对婴儿进行至少18年的健康随访。

3. 关于伦理道德问题

面对大家最为关注的伦理问题,贺建奎以艾滋病的严重性作为回应。

贺建奎说:“我们不仅仅是针对这样的案例,成千上万的有患艾滋病风险的婴儿都需要这样的保护。我曾经接触过很多艾滋病人,他们需要把孩子送给亲戚抚养,我为我的工作自豪。”

他强调,基因编辑技术将帮助到众多有遗传性疾病或有潜在感染风险的家庭。“我们可以帮助更多的人,这是一个透明公开的过程,我愿意和社会分享,社会可以决定接下来可以怎么做。”


Geneticist He Jiankui, who says he has altered the genes of twin girls born this month, has spoken out about the details of his controversial medical procedure at the Second International Summit on Human Genome Editing at the University of Hong Kong on Wednesday.

He started his speech by apologizing for the "leak" of his work before the conference, and said the Southern University of Science and Technology in Shenzhen, where he works, was unaware of the trial he conducted.

In gene editing, any off-target effects would pose very serious consequences, and extend through the whole body, the researcher admitted, adding that his team carried out embryo off-target detection assessment prior to the trial taking into consideration potential off-target sites mentioned in previous studies.

"We identified one potential off-target in the intragenic region, although we could not identify if it is hereditary or related to editing," noted He.

The volunteering couple was briefed about the potential off-target site and chose to start a two-embryo pregnancy.

He said the husband is HIV positive, while the spouse is HIV negative. The twin baby girls, born a few weeks ago, are said to be resistant to HIV infection thanks to their edited genes.

No off-target site was observed genome-wide after birth testing, the researcher assured.

"We plan to monitor the twin babies for the next 18 years until they are adult and give their consent for further monitoring," said He.

The researcher also said another potential pregnancy with gene-edited embryos is currently underway.

责任编辑: 鲁达

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