A growing number of children have been born with the help of a pioneering technique that effectively means they carry genetic material from three people. It is opening up a new debate on what rights they should have.

越來越多的孩子是在一項開創性技術的幫助下出生的,這實際上意味著他們攜帶著三個人的遺傳物質,掀起了一場關于他們應該享有什么權利的新辯論。

A groundbreaking fertility procedure that uses DNA from three people to prevent devastating mitochondrial diseases has resulted in the birth of several healthy babies in a number of countries around the world – including, most recently, in the UK.

這種開創性的生殖手術利用三個人的 DNA來預防致命的線粒體疾病,世界上多個國家已經利用這種手術(包括最近在英國)誕生了多名健康的嬰兒。

The new technique, called mitochondrial replacement therapy, gives hope to couples who have lost children to rare genetic conditions. But it has also faced opposition, partly because of broader concerns around processes that involve genetic modifications in humans.

這項新技術名為線粒體替代療法,為那些因罕見遺傳病而失去孩子的夫婦帶來了希望。但也不乏反對聲音,部分原因是人們普遍擔憂該技術涉及人類基因改造。

With some of the first children to be born using mitochondrial donation turning seven years old this year, and the technique becoming more widely used, regulators and parents are also facing ethical questions to do with the children's identity and origin.

隨著第一批利用線粒體捐獻出生的部分孩子今年七歲了,以及該技術的應用變得越來越普遍,監管機構和父母也面臨著涉及孩子的出身和血緣的倫理問題。

One crucial question being raised is whether the children should have the right to know their mitochondrial donors' identity.

人們提出一個關鍵問題是,孩子是否應該有權知道他們的線粒體捐獻者的身份。

Experts say that existing research on more established forms of donor-assisted conception, such as sperm and egg donation could help answer those questions – and find the best way to ensure the children's emotional wellbeing.

專家表示,目前針對捐精和捐卵等成熟的供體受孕的研究有助于解答這些問題——并找到如何確保兒童情感健康的最佳辦法。

Mitochondria are found inside most human cells where they act as mini power plants turning sugar into energy and they also carry their own DNA

線粒體存在于大多數人體細胞內,充當著將糖分轉化為能量的微型發電廠,線粒體還攜帶自己的 DNA

Mitochondria are special compartments inside our cells that convert the energy found in food into a form that can be used to power bodies. But they can't do this if they carry faults that lead to disease. We inherit our mitochondria from our mothers, so a woman who carries some faulty mitochondria can pass these onto her children.

線粒體是我們細胞內的特殊隔間,能夠將食物能量轉化成為人體供能的形式。但如果線粒體存在致病缺陷,它們就失去了這個功能。我們的線粒體來自母系遺傳,因此女性會將有缺陷的線粒體遺傳給她的后代。

Mitochondrial replacement therapy is a form of IVF that combines the DNA from a mother and father inside an egg donated by another woman that contains healthy mitochondria.

線粒體替代療法是一種體外受精方式,將父母雙方的 DNA 結合后,植入另一名女性捐獻的卵子中,該卵子含有健康的線粒體。

The resulting embryo carries DNA from the two parents, but also carries a tiny amount of genetic material from the donor – around 0.1%. This donor DNA is contained within the mitochondria itself. Experts emphasise that the baby should not be regarded as a "three-parent" baby, but a "three-person" baby: they have two parents, and a donor.

由此誕生的胚胎攜帶父母雙方的 DNA,但也攜帶少量來自捐獻者的遺傳物質——大約 0.1%,捐獻者的 DNA 包含在線粒體中。專家強調,這種嬰兒不應被視為“三親”嬰兒,而是“三人”嬰兒:他們有兩個父母,一個捐獻者。

Around the world, rules around the procedure are still evolving. The UK has pioneered laws and regulations to allow mitochondrial replacement techniques, and remains one of the few countries to have explicitly legalised it. Australia also legalised the procedure in 2022.

全世界針對這種手術的法規仍在完善當中。英國率先制定了允許使用線粒體替代技術的法律法規,至今仍是少數幾個明確將其合法化的國家之一。2022年,澳大利亞也將這種手術合法化了。

In the United States, the procedure is de facto banned: clinical research using mitochondrial replacement techniques in humans cannot legally proceed after the Food and Drug Administration expressed safety concerns. In Canada, the procedure is also banned. However, people have found ways to circumvent such restrictions by involving countries with laxer or absent rules. In 2016 a boy was born to a Jordanian couple in the US with the help of a mitochondrial replacement procedure, part of which was carried out in Mexico.

美國實際上禁止了這種手術:在美國食品和藥物管理局表示安全擔憂后,利用線粒體替代技術進行人體臨床研究是違法的。加拿大也禁止了這種手術。然而人們想出了規避法規限制的辦法,讓那些法規比較寬松或缺失的國家參與其中。2016 年,一對約旦夫婦在線粒體替代手術的幫助下在美國生下一名男嬰,其中一部分手術是在墨西哥進行的。

Unlike the parents' DNA, the donor's mitochondrial DNA does not influence traits such as hair or eye colour, or personality. This difference, and the fact that only a tiny bit of genetic material is from the mitochondrial donor, has had important regulatory consequences.

與父母的 DNA 不同,捐獻者的線粒體 DNA 不會影響頭發、眼睛顏色、性格等特征。這種差異,以及只有一丁點遺傳物質來自線粒體捐獻者的事實,已經造成了重大的監管后果。

In the UK, a woman who donates her eggs for use in mitochondrial donation treatment is not considered the genetic parent of the resulting child, and remains anonymous – and the resulting child cannot apply to find out her identity. From the age of 16, a child can, however, access some non-identifying information about their mitochondrial donor, such as information about their personal and family medical history.

在英國,捐獻卵子用于線粒體捐獻治療的女性不被視為孩子的親生父母,并且保持匿名——所生的孩子不能申請查明該女性的身份。但是從 16 歲起,孩子可以了解線粒體捐獻者的某些非身份信息,例如個人和家族的病史。

Sperm and egg donation, in contrast, is now open-identity only in the UK (the child can apply to know the donor's identity when they are 18).

相比之下,目前只有英國允許精子和卵子捐獻者公開身份(孩子年滿18歲可以申請了解捐獻者的身份)。

John Appleby, a lecturer in medical ethics at Lancaster University, in the UK, disagrees with the UK's regulatory decision to make mitochondrial donation legally anonymous. He argues that children conceived via mitochondrial donation should have the right to find out the donor's identity, as they do in the UK in the case of sperm and egg donation.

約翰·阿普爾比是英國蘭開斯特大學的醫學倫理學講師,他不同意英國監管機構讓線粒體捐獻者保持法定匿名的決定。他認為,通過線粒體捐獻孕育出來的孩子應該有權查明捐獻者的身份,正如英國的精子和卵子受捐者享有這樣的權利。

"The psychological evidence to date indicates that some people conceived with donated eggs, sperm or embryos, feel it is important to know identifying information about their donors," he says. "They tend to express a number of reasons why, ranging from wanting to thank the donor, wanting to find other siblings, or because it matters that they have any genetic tie to their donor and possibly want to meet them."

“迄今為止的心理學證據表明,一些利用捐獻的卵子、精子、胚胎孕育出來的人覺得,了解捐獻者的身份信息很重要”,他說道。“他們往往羅列出許多理由,包括希望感謝捐獻者,希望找到其他兄弟姐妹,或者因為重要的是,與他們有血緣關系的捐獻者可能希望見到他們”。

In his view, many of those interests would also potentially apply to mitochondrial donation, which, after all, uses part of the eggs from a donor. In particular, there may be reasons that are not just about the genetic connection, and the quantity of genes passed on. "Based on what we know about people's motivations for wanting to contact their donor, the fact that a mitochondrial donor gave someone a life free of a terrible disease is likely a good reason for the donor-conceived person to want to contact them."

在他看來,其中的許多好奇心可能也適用于線粒體捐獻,因為畢竟使用了捐獻者的部分卵子。可能有些理由不只涉及到血緣關系和遺傳的基因數量。“根據我們了解的人們想要聯系捐獻者的動機,線粒體捐獻者使對方免于患上可怕的疾病,這一事實可能是受捐者想要聯系他們的主要原因”。

Decades of research on new forms of families suggests that children are far more flexible about issues like their biological origins and genetic-relatedness than was previously thought. Open communication with the child about their origins, and being donor-conceived, has also been shown to be very important for their wellbeing.

數十年來對新型家庭的研究表明,兒童在血緣和遺傳相關性等問題上比以前想象的要靈活得多。與孩子就他們的血緣和供體受孕進行坦誠的交流也證明對他們的健康非常重要。

A longitudinal study by the University of Cambridge Centre for Family Research followed up children born through egg donation from infancy to adulthood. It investigated a range of questions about their wellbeing, identity and relationships, such as how they felt when they learned about their biological origins and the quality of their relationship with their mothers (who used donated eggs to have them). Findings from the most recent phase of the study, published in 2023 and based on research done when the young people reached the age of 20 showed that they had good relationships with their parents and high levels of psychological wellbeing.

劍橋大學家庭研究中心進行了一項縱向研究,追蹤了通過捐卵出生的兒童從嬰兒期到成年期的情況。針對他們的幸福感、身份認同、人際關系做了一系列調查,例如當他們得知自己血緣時的感受、與母親的關系質量(利用捐獻的卵子孕育他們)。根據2023年公布的最新研究階段的結論,并結合對這些年輕人達到20歲時所做的調查,表明他們與父母的關系良好,心理健康水平較高。

Susan Golombok, professor emerita of family research and former director of the Centre for Family Research at the University of Cambridge, who led the study, says she would expect similar findings among children born after mitochondrial donation.

劍橋大學的家庭研究名譽教授、家庭研究中心前主任蘇珊·戈隆貝克主持了這項研究,她表示期待從那些通過線粒體捐獻而出生的孩子中得出類似的結論。

"As 50% of the children's genes were from an egg donor, whereas only mitochondrial DNA comes from the egg donor in children born through mitochondrial donation, it is not expected that the children would experience psychological difficulties as a result of their method of conception," she says.

“兒童基因有50%來自卵子捐獻者,而通過線粒體捐獻出生的兒童只有線粒體DNA來自卵子捐獻者,他們應該不會因為受孕方式而產生心理障礙”,她說道。


Families where mothers conceived using sperm donation offer insights into how children born from mitochondrial replacement might feel about their donors

從一個母親通過捐精受孕的家庭可以看出,通過線粒體替代而出生的孩子可能對捐獻者有何感受。

An important finding from the study is that children born through egg donation benefit from being told about their donor conception when they are young, says Golombok. "Although the psychological implications of mitochondrial donation [might] appear to be less significant, it seems likely that these children also would benefit from openness about their conception," she adds.

這項研究得出一個重要結論,如果孩子從小就知道自己捐卵受孕的身世,這對他們來說是有益的,戈隆貝克說道。“盡管線粒體捐獻造成的心理影響可能不大,但坦言相告好像也能讓這些兒童受益,”她補充道。

Research on families created with the help of sperm donation sheds further light on the benefits of openness, and may help when it comes to envisaging how a three-person IVF baby may one day feel about their donor.

針對在捐獻精子的幫助下建立家庭的研究進一步揭示了坦言相告的好處,可能有助于展望三親試管嬰兒有一天會對捐獻者有何感受。

"I think it's terrific that parents who would ordinarily lose a child to mitochondrial disease now have a potential option for giving birth to a healthy child," says Nanette Gartrell, a psychiatrist and principal investigator at the National Longitudinal Lesbian Family Study in the US. The study, which began in the 1980s, has followed a group of lesbian mothers who conceived children via sperm donation, and also followed the children's development and wellbeing into adulthood. Gartrell says the study's findings hold important wider lessons, for example when it comes to the issue of openness versus secrecy around donor conception.

“父母原本會因為線粒體疾病而失去孩子,現在可以選擇生下健康的孩子,我認為這太棒了”,來自美國“國家縱向女同性戀家庭研究”的精神病學家兼首席研究員納內特·加特雷爾說道。這項研究始于 20世紀80 年代,追蹤了一批捐精受孕的女同性戀母親,并追蹤了孩子成年后的發育和健康狀況。加特雷爾表示,研究成果積累了重要而廣泛的經驗,例如在供體受孕方面應該坦言相告還是保密的問題。

"Children conceived by sexual minority parents through assisted reproductive technology know about their conception from early childhood," says Gartrell. The mothers in the study, for example, were always open with their children about their origins. As adults, roughly half of the donor-conceived children in the study reported good relationships with their donors, while 20% wished for more contact.

“性少數父母通過輔助生殖技術生下的孩子從小就知道自己的身世”,加特雷爾說道。例如,這項研究中的母親都對孩子的身世坦言相告。研究中約有一半供體受孕的兒童在成年后表示與捐獻者的關系良好,20% 的人希望與捐獻者有更多的聯系。

Interestingly, those who had a positive relationship tended to highlight factors other than their genetic connection, such as the donor's kind personality, or the fact that they talked to each other a lot. Some participants said that looking for a resemblance was part of why they had wanted to meet their donor, while others reported a more general curiosity. One participant wrote that before meeting his donor, he felt "the mystique of unknown origins".

有趣的是,與捐獻者有良好關系的人往往看重血緣關系以外的因素,例如捐獻者的友好性格,或者彼此相談甚歡。有些參與者表示尋找相似之處是他們想見到捐獻者的部分原因,也有參與者說是出于一般的好奇心。一位參與者寫道,在見到捐獻者之前,他有一種“身世不明的神秘感”。

Based on her research and wider knowledge of the impact of secrecy versus openness on children conceived via sperm donation, Gartrell argues that openness and the opportunity to contact the donor at an age-appropriate time are more beneficial for the children than concealing it. "Human beings have a right to know their genetic origins to the extent possible," she says.

加特雷爾結合自己的研究,以及更廣泛地認識到保密與坦誠對捐精誕生的兒童的影響,她認為相比隱瞞真相,坦言相告和在適當的年齡有機會聯系捐獻者對孩子更有好處。她說:“人類有盡可能了解自己身世的權利”。

In the case of mitochondrial donation, there may also be other reasons why the child may wish to know, according to Gartrell. "Informing children of the mitochondrial donation that prevented a fatal disease is also important because this information may prove medically helpful to those children in ways that scientists are currently unaware. As a psychiatrist and researcher, I would consider this disclosure similar to informing a child that a life-saving foetal cardiac procedure was performed on them, for example."

據加特雷爾所說,接受線粒體捐贈的孩子希望了解自己的身世可能還有其他理由。“告訴孩子接受過預防致命疾病的線粒體捐贈也很重要,因為這些信息可能對這些孩子有醫學幫助,只不過現在的科學家還做不到。作為一名精神病學家和研究人員,我認為這種坦誠相告相當于告訴孩子,他們接受過救命的胎兒心臟手術”。

For now, the pioneering procedure of mitochondrial donation treatment may feel like we're treading completely new ground – creating an entirely new kind of human, in a way. But as these studies on other reproductive technologies suggest, the children themselves may be far less fazed by their origins than the public. Whether and how soon the public will embrace the technique may, however, continue to vary from country to country – just as societies still show varying attitudes to standard IVF.

目前,開創性的線粒體捐獻治療手術可能讓人覺得我們正在涉足全新的領域——在某種程度上創造了一種全新的人類。但正如其他生殖技術方面的研究所表明的,孩子自己可能遠沒有公眾那么擔心自己的出身。但是,公眾是否以及多久以后接受這項技術可能因國家而異——正如社會仍然對普通的體外受精方式態度不一。