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Private and Public Eugenics: Genetic Testing and Screening in India

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Abstract

Epidemiologists and geneticists claim that genetics has an increasing role to play in public health policies and programs in the future. Within this perspective, genetic testing and screening are instrumental in avoiding the birth of children with serious, costly or untreatable disorders. This paper discusses genetic testing and screening within the framework of eugenics in the health care context of India. Observations are based on literature review and empirical research using qualitative methods. I distinguish ‘private’ from ‘public’ eugenics. I refer to the practice of prenatal diagnosis as an aspect of private eugenics, when the initiative to test comes from the pregnant woman herself. Public eugenics involves testing initiated by the state or medical profession through (more or less) obligatory testing programmes. To illustrate these concepts I discuss the management of thalassaemia, which I see as an example of private eugenics that is moving into the sphere of public eugenics. I then discuss the recently launched newborn screening programme as an example of public eugenics. I use Foucault’s concepts of power and governmentality to explore the thin line separating individual choice and overt or covert coercion, and between private and public eugenics. We can expect that the use of genetic testing technology will have serious and far-reaching implications for cultural perceptions regarding health and disease and women’s experience of pregnancy, besides creating new ethical dilemmas and new professional and parental responsibilities. Therefore, culturally sensitive health literacy programmes to empower the public and sensitise professionals need attention.

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Notes

  1. See http://www.dbtindia.nic.in/programmes/progmain.html (website accessed 14.10.2007).

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Acknowledgements

I would like to thank Dr I.C. Verma, Head of Genetic Medicine, and his colleagues from the genetics unit and Dr V.K. Khanna, Head of Thalassemia programme at Sir Ganga Ram Hospital, New Delhi, for the cooperation extended to me and allowing me access to their patients. Also, sincere thanks are due to the parents/families of thalassemic patients who agreed to speak to me.

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  1. International Institute for Asian Studies, Leiden University, P.O. Box 9515, 2300 RA, Leiden, The Netherlands

    Jyotsna Agnihotri Gupta

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  1. Jyotsna Agnihotri Gupta
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Correspondence to Jyotsna Agnihotri Gupta.

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Gupta, J.A. Private and Public Eugenics: Genetic Testing and Screening in India. Bioethical Inquiry 4, 217–228 (2007). https://doi.org/10.1007/s11673-007-9059-0

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