The Spectre of Coercion: Is Public Health Genetics the Route to Policies of Enforced Disease Prevention?

Abstract

The paper discusses options for disease prevention in Public Health Genetics and attempts to assess the probability that coercive strategies might be chosen in public health policies that impose duties to undergo genetic testing. Given the social values, legal and political cultures and professional orientations in Western Europe and the United States, which provide the terms of reference for this assessment, it is unlikely that the preventive options which might emerge from human genetics in the future will trigger policies that force preventive behavior upon people, except in the cases where such enforcement is designed to protect third parties.

Private and Public Eugenics: Genetic Testing and Screening in India

“…This practice thus amounts to de facto mandatory genetic screening; nevertheless, it goes virtually unchallenged, which is evidence that, despite official tribute to the principle of informed consent, coercive strategies may prevail to ensure that the preventive benefits of genetic screening can be reaped [12].…”

“…"This discourse of risk implicates these practices and procedures in relations of power in ways that, for the most part, have not been critically interrogated" [15]. "Public health policies that focus on individual risk factors are met with suspicion because they could lead to 'blaming the victim' instead of striving for social change, and because they restrict individual freedom and place private choice under public surveillance" [12].…”

“…This poses problems for the principle of non-directive counselling and obtaining truly informed consent from women/ couples for testing procedures. There are no indications that geneticists and genetic counsellors pursue a hidden public health agenda by talking parents into aborting pregnancies against their will in order to reduce the burden of congenital diseases in the population [12]. The 'pressure' to choose abortion after PND is more subtle: it arises mainly from the parents' own understanding that it is 'not fair toward a child to bring it to birth with a severe disability.'…”

“…Thus, while it seems inconceivable that it will ever be adopted in our societies as public policy or legal concept that parents who knowingly bring foetuses with severe handicaps to birth commit child abuse, parents may nevertheless feel pressure to terminate such pregnanciespressure from social environments which disagree and pressure from 'within' themselves in terms of moral doubt [12].…”

Public Health Genomics (PHG): From Scientific Considerations to Ethical Integration

“…45 It can lead us to put the focus on genetic factors instead of also insisting on the importance of healthy behaviours and environments. It creates an "individualization" of responsibility 46 in which individuals are carriers of inheritable "genetic defects" that represent a threat to public health. This situation might minimize the moral duty of the collectivity to provide equitable access to environmental health determinants such as healthy food, housing, education, etc.…”