Research question

What ethical implications, issues and concerns play a role in conducting follow-up studies of children born after assisted reproductive technologies (ART)?

Design

Literature study and relevant experiences of academic medical centres in Brussels, Belgium, and Maastricht, the Netherlands were used to identify and analyse the most pertinent ethical implications, issues and concerns.

Results

According to recommendations from the European Society of Human Reproduction and Embryology, follow-up (ideally long term) of children conceived through medically assisted reproduction (MAR) should be an integral part of introducing new ART. With potentially risky new ART on the horizon, these recommendations need to be taken more seriously. Apart from practical barriers, such as funding, challenges for follow-up include securing active involvement of families of children conceived through MAR, starting with parents of young children, and ideally involving consenting adolescents and adults during a large part of their lives, possibly even into the next generation.

Conclusions

From an ethical viewpoint, the most pertinent issues include the proportionality of the inevitable burdens and risks for families of children conceived through MAR, and the implications of the principle of respect for autonomy. The proportionality requirement is most critical when it concerns incompetent children, who should not be included in research with more than minimal burdens and risks if there is no reasonable expectation of benefit for themselves. With respect for autonomy, we argue that, when seeking voluntary consent for participating in follow-up studies that meet the condition of proportionality, professionals may encourage members of families of children conceived through MAR to partake in follow-up research.

中文翻译：

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生殖医学领域的后续：伦理探索。

研究问题

在对辅助生殖技术 (ART) 后出生的儿童进行后续研究时，哪些伦理影响、问题和担忧会发挥作用？

设计

比利时布鲁塞尔和荷兰马斯特里赫特学术医疗中心的文献研究和相关经验被用来识别和分析最相关的伦理影响、问题和关注。

结果

根据欧洲人类生殖和胚胎学会的建议，对通过医学辅助生殖 (MAR) 受孕的儿童进行随访（理想情况下是长期的）应该是引入新 ART 的一个组成部分。随着潜在风险的新 ART 即将出现，需要更认真地对待这些建议。除了资金等实际障碍外，后续挑战还包括确保通过 MAR 怀孕的儿童的家庭积极参与，从幼儿的父母开始，理想情况下，在他们生命的大部分时间里，包括同意的青少年和成年人，甚至可能进入下一代。

结论

从伦理的角度来看，最相关的问题包括通过 MAR 怀孕的孩子的家庭不可避免的负担和风险的比例，以及尊重自主原则的含义。当涉及不称职的儿童时，比例要求最为关键，如果对他们自己没有合理的利益预期，他们不应以超过最小的负担和风险被纳入研究。关于自主权，我们认为，在自愿同意参与符合比例条件的后续研究时，专业人士可以鼓励通过 MAR 受孕的儿童的家庭成员参与后续研究。