Department of Development Economics, Research Group on Economics and Management of Innovation, Autonomous University of Madrid, Madrid, Spain.
Department of Applied Economics, Public Economics and Political Economy, Complutense University of Madrid, Madrid, Spain.
J Assist Reprod Genet. 2021 Feb;38(2):305-317. doi: 10.1007/s10815-020-02017-9. Epub 2021 Jan 6.
We have been inquiring into the diffusion process of reproductive genetic services (RGS) and the viability of geneticization in human reproduction.
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.
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.
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.
我们一直在研究生殖遗传服务(RGS)的扩散过程和遗传在人类生殖中的可行性。
我们对以色列和西班牙的专家进行了两轮改良型德尔菲调查,以分析他们对 RGS 未来应用的监管态度和期望。我们认为,基于“技术推动”冲动的 RGS 扩散解释应该辅以“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 的扩散正在以“螺旋式”的方式推进,技术同时充当原因和结果,调节社会接受度,并重新定义健康和责任的概念。
我们提出,在四个程序方面存在 RGS 监管的“灰色地带”:利用种系基因组修饰(GGM)治疗严重的单基因疾病、检测染色体异常的胚胎植入前遗传学检测(PGT)、多因素疾病的 PGT 和全外显子组筛查的 PGT。
尽管远未实现人类生殖的遗传化,但我们的研究结果表明,由于技术-科学想象往往会塑造监管,从而有利于 RGS 的扩散,政策制定者应该关注这些程序,关注良好实践和公平性,同时提供有关潜在风险和预期成功率的可靠信息。广泛而包容的社会辩论对于克服在医学和非医学遗传选择和工程用途之间划出明确界限的困难以及在允许生殖自主权和保护公共利益之间寻找正确平衡至关重要。