Private and Public Eugenics: Genetic Testing and Screening in India

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.

Reproductive technologies and the quality of offspring in Asia: reproductive pioneering and moral pragmatism?

“…Other scholars, however, find a redefined concept of eugenics useful in situations where selective abortion takes place under strong pressure from the local or national community (Mao 1998;Mao and Wertz 1997;Nie 2005). The particular form of eugenics depends on who determines what traits are desirable in the newborn, including private couples (see Gupta 1997), women in general, the family household, the local community and the state.…”

The Effect of Visible Facial Difference on Personal Space During Encounters With the General Public

“…Technologies for early detection of disability are continually becoming more sophisticated, and due to selective abortion and IVF procedures, certain disabilities are dwindling in numbers in contemporary society, a trend some term private eugenics (Gupta, 2007). The health care focus on the clinical treatment of visible difference reinforces preexisting societal biases that favour physical attractiveness and pathologize visible difference.…”

Exploring Indian women's reproductive decision-making regarding prenatal testing

“…An increasing number of pregnant women from the middle and upper classes undergo PNT to prevent the birth of children who may be affected. Prenatal testing is also offered for thalassaemia screening (Gupta 2007). Public awareness regarding the role of genes in the incidence of disease and the possibility of making use of PNT is increasing; it is associated with modernity and good parenthood.…”