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Regulating reproductive genetic services: dealing with spiral-shaped processes and techno-scientific imaginaries
Journal of Assisted Reproduction and Genetics ( IF 3.2 ) Pub Date : 2021-01-06 , DOI: 10.1007/s10815-020-02017-9
Ido Alon 1 , Rosa Urbanos-Garrido 2 , José Guimón 1
Affiliation  

Purpose

We have been inquiring into the diffusion process of reproductive genetic services (RGS) and the viability of geneticization in human reproduction.

Method

A 2-round modified-Delphi survey was applied amongst Israeli and Spanish experts to analyze regulatory attitudes and expectations about the future applications of RGS. We argue that an explanation of RGS diffusion based on a ‘technology-push’ impulse should be complemented by a ‘demandpull’ approach, which underscores the importance of regulatory frameworks and demand-inducing policies. The diffusion of RGS is advancing in a ‘spiralshaped’ process where technology acts as a cause and effect simultaneously, modulating social acceptance and redefining the notions of health and responsibility along the way.

Results

We suggest that there is a ‘grey-zone’ of RGS regulations regarding four procedures: the use of germline genome modification (GGM) for severe monogenic disorders, preimplantation genetic testing (PGT) for detection of chromosomal abnormalities, PGT for multifactorial diseases, and PGT with whole-exome screening.

Conclusions

Although far from the geneticization of human reproduction, our findings suggest that, since techno-scientific imaginaries tend to shape regulations and thus favor the diffusion of RGS, policymakers should pay attention to those procedures by focusing on good practices and equity while providing sound information on potential risks and expected success rates. A broad and inclusive societal debate is critical for overcoming the difficulty of drawing a clear line between medical and non-medical uses of genetic selection and engineering while searching for the right balance between allowing reproductive autonomy and protecting the public interest.



中文翻译:


监管生殖遗传服务:处理螺旋形过程和技术科学想象


 目的


我们一直在研究生殖遗传服务(RGS)的扩散过程以及遗传化在人类生殖中的可行性。

 方法


以色列和西班牙专家进行了两轮修改德尔菲调查,以分析监管机构对 RGS 未来应用的态度和期望。我们认为,基于“技术推动”冲动对 RGS 扩散的解释应该辅以“需求拉动”方法,这强调了监管框架和需求诱导政策的重要性。 RGS 的传播正在“螺旋形”过程中推进,其中技术同时充当因果关系,调节社会接受度并重新定义健康和责任的概念。

 结果


我们建议,RGS 法规中关于四个程序存在一个“灰色地带”:使用种系基因组修饰 (GGM) 治疗严重的单基因疾病、植入前基因检测 (PGT) 用于检测染色体异常、PGT 用于多因素疾病,以及PGT 与全外显子组筛查。

 结论


尽管与人类生殖的遗传化相去甚远,但我们的研究结果表明,由于技术科学的想象往往会形成法规,从而有利于 RGS 的传播,政策制定者应关注这些程序,重点关注良好实践和公平性,同时提供关于 RGS 的可靠信息。潜在风险和预期成功率。广泛而包容的社会辩论对于克服在基因选择和工程的医学和非医学用途之间划清界限的困难至关重要,同时在允许生殖自主权和保护公共利益之间寻求适当的平衡。

更新日期:2021-01-06
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