Michele Loi

1. I am grateful to the respondents for the opportunity provided, to clarify the concept of a libertarian right to test and its normative implications. To sum up, I concede that genomes have a normatively salient informational aspect, that exercising the LRT may cause informational harm and violate rights of genetically related individuals, and that this is relevant to the regulation of genetic testing. But such considerations are logically compatible with a non-absolute LRT and its libertarian justification. The LRT is practically relevant because it inverts the burden of justification and recognising a LRT may affect the way in which other rights are protected in a conflict of rights case. I will try to clarify this further, in what follows. 2. Consider B, an individual who is, and is aware of being, genetically related to A. Admittedly, while person A has a LRT, the interests of person B should also be protected.1 …

This paper discusses the concept of “human disenhancement”, i.e. the worsening of human individual abilities and expectations through technology. The goal is provoking ethical reflection on technological innovation outside the biomedical realm, in particular the substitution of human work with computer-driven automation. According to some widely accepted economic theories, automatization and computerization are responsible for the disappearance of many middle-class jobs. I argue that, if that is the case, a technological innovation can be a cause of “human disenhancement”, globally, and all things considered, even when the local and immediate effect of that technology is to increase the demand of more sophisticated human skills than the ones they substitute. The conclusion is that current innovations in the ICT sector are objectionable from a moral point of view, because they disenhance more people than they enhance.

Recent evidence of intergenerational epigenetic programming of disease risk broadens the scope of public health preventive interventions to future generations, i.e. non existing people. Due to the transmission of epigenetic predispositions, lifestyles such as smoking or unhealthy diet might affect the health of populations across several generations. While public policy for the health of future generations can be justified through impersonal considerations, such as maximizing aggregate well-being, in this article we explore whether there are rights-based obligations supervening on intergenerational epigenetic programming despite the non-identity argument, which challenges this rationale in case of policies that affect the number and identity of future people. We propose that rights based obligations grounded in the interests of non-existing people might fall upon existing people when generations overlap. In particular, if environmental exposure in F0 will affect the health of F2 through epigenetic programming, then F1 might face increased costs to address F2's condition in the future: this might generate obligations upon F0 from various distributive principles, such as the principle of equal opportunity for well being.

Norman Daniels argues that health is important for justice because it affects the distribution of opportunities. He claims that a just society should guarantee fair opportunities by promoting and restoring the “normal functioning” of its citizens, that is, their health. The scope of citizens' mutual obligations with respect to health is defined by a reasonable agreement that, according to Daniels, should be based on the distinction between normal functioning and pathology drawn by the biomedical sciences. This paper deals with the question whether it is legitimate to ascribe the responsibility of defining this important moral boundary to the biomedical sciences, which Daniels regards as value neutral. Daniels appeals to Christopher Boorse's sophisticated bio-statistical theory (BST) to show the plausibility of a value-neutral distinction between normal functioning and pathology. Here I argue that a careful analysis of the concept of normal functioning, such as the one offered by the recent critique by Elselijn Kingma, shows that it depends from evaluative assumptions. This, I argue, implies that Daniels's theory must give up its naturalistic commitments. In the conclusion, the paper offers a detailed discussion and an objection to one of Daniels's arguments in favor of a moderate form of normativism that remains too close to Boorse's naturalism.

In this article, we defend a normative theory of prenatal equality of opportunity, based on a critical revision of Rawls's principle of fair equality of opportunity . We argue that if natural endowments are defined as biological properties possessed at birth and the distribution of natural endowments is seen as beyond the scope of justice, Rawls's FEO allows for inequalities that undermine the social conditions of a property-owning democracy. We show this by considering the foetal programming of disease and the possibility of germ-line modifications. If children of lower socioeconomic background are more likely to develop in a poor foetal environment and germ-line enhancements are available only to the rich, initial inequalities between the rich and the poor would grow, and yet FEO would be satisfied. In order to avoid the problem, we propose a revised FEO principle omitting any reference to the comparison of natural endowments. Our revised FEO requires that institutions mitigate social class effect from reproduction and gestation to the greatest extent compatible with parental freedoms and the value of the family

Enhancements of the human germ-line introduce further inequalities in the competition for scarce goods, such as income and desirable social positions. Social inequalities, in turn, amplify the range of genetic inequalities that access to germ-line enhancements may produce. From an egalitarian point of view, inequalities can be arranged to the benefit of the worst-off group (for instance, through general taxation), but the possibility of an indefinite growth of social and genetic inequality raises legitimate concerns. It is argued that inequalities produced by markets of germ-line enhancements are just if it they are embedded in a framework of social institutions that satisfies two conditions: (i) Rawls’ Difference Principle, which states that inequalities of income and wealth should benefit the worst-off group; (ii) the lexically prior 'principle of rough equality', which states that citizens’ initial life-chances should be similar enough, so that extreme inequalities in income, wealth and power are not produced or accumulated through institutions justified by the Difference Principle. The principle of rough equality replaces the Rawlsian principles of the Fair Value of the Political Liberties and Fair Equality of Opportunity in a post-genomic society and expresses a concern with background political equality, which is argued to be a condition of the freedom and equality of citizens that should not be traded off with material benefits. Extreme inequalities are defined in terms of political equality.

Does biomedical enhancement challenge justice in health care? This paper argues that health care justice based on the concept of normal functioning is inadequate if enhancements are widespread. Two different interpretations of normal functioning are distinguished: the “species typical” vs. the “normal cooperator” account, showing that each version of the theory fails to account for certain egalitarian intuitions about help and assistance owed to people with health needs, where enhancements are widespread

This paper explores the analogy between food label information and genetic information, in order to defend the right not to know judgmental nutritional information, such as the one conveyed by traffic light labels and other, more aggressive, recent proposals. Traffic light labeling judges the nutritional quality of food by means of colored flags on the front pack . It involves a simplification of the link between food quality and health outcomes. Unlike GDAs ,1 it does not present the consumer with neutral nutritional information, but conveys an interpretation of the link between nutritional qualities and ..