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Regulating reproductive genetic services: dealing with spiral-shaped processes and techno-scientific imaginaries

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Abstract

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.

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Notes

  1. Data for PGS in Israel are not available.

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Acknowledgments

This work was possible thanks to many individuals who participated in interviews and replied to the survey voluntarily and without remuneration. We are especially grateful to Prof. Vardit Ravitsky, who guided and revised the questionnaire; to Dr. Javier Rey del Castillo, who greatly assisted in the data collection; and Dr. Vincenzo Pavone, who revised the paper. Great thanks to Olivia Hirshfield, Matthew Ruiz, and Mauro Hernández for proofreading the text.

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  1. Department of Development Economics, Research Group on Economics and Management of Innovation, Autonomous University of Madrid, Madrid, Spain

    Ido Alon & José Guimón

  2. Department of Applied Economics, Public Economics and Political Economy, Complutense University of Madrid, Madrid, Spain

    Rosa Urbanos-Garrido

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Alon, I., Urbanos-Garrido, R. & Guimón, J. Regulating reproductive genetic services: dealing with spiral-shaped processes and techno-scientific imaginaries. J Assist Reprod Genet 38, 305–317 (2021). https://doi.org/10.1007/s10815-020-02017-9

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