Care este statutul moral al copiilor? Ce înseamnă egalitatea morală dintre copii şi adulți? Care sunt constrângerile pe care le impune acceptarea acestei egalități în ceea ce priveşte felul în care pot fi tratați copiii în familie sau în societate ? Cine are ce fel de responsabilitate pentru copii ? În capitolul de față voi discuta astfel de întrebări. Voi analiza relația dintre copii, părinți şi stat, în dimensiunea ei practică (felul în care ne raportăm la copii), din punct de (...) vedere legal (constrângerile legale asupra felului în care ne raportăm la copii) şi din punct de vedere moral (cum ar trebui să ne raportăm la copii). Voi începe cu o scurtă incursiune în istoria relațiilor dintre copii, părinți, şi stat, atât din punct de vedere legal, cât şi filosofic. Voi prezenta conceptul de statut moral şi ideea de egalitate morală între copii şi adulți. Voi ilustra schimbările sociale şi legislative în ce priveşte acceptarea statutului moral al copiilor şi a egalității morale între copii şi adulți, folosind exemple din România şi Suedia. Voi examina dinamica dintre aspirațiile legale şi morale la care aderă România în ce priveşte statutul moral al copiilor şi normele sociale despre copii, copilărie, şi familie, care nu sunt întotdeauna în acord cu aceste aspirații. Voi urmări apoi schimbările care au avut loc în ultimele decenii în ce priveşte limitele responsabilității parentale. (shrink)

Lee (2017) calls for greater attention to the shared epistemological and normative grounds of both public health ethics and environmental ethics, and to Potter’s original conception of bioethics, which, as she rightly observes, has been largely disregarded in contemporary North American bioethics scholarship and practice. In a previous publication we also argued in favor of reviving the Potterian approach to bioethics; we built a case grounded in “the relatively new field of molecular epigenetics [that] provides novel information that should serve (...) as additional justification for expanding the scope of bioethics to include environmental and public health concerns.”. (shrink)

Recent epidemiological reports of associations between socioeconomic status and epigenetic markers that predict vulnerability to diseases are bringing to light substantial biological effects of social inequalities. Here, we start the discussion of the moral consequences of these findings. We firstly highlight their explanatory importance in the context of the research program on the Developmental Origins of Health and Disease (DOHaD) and the social determinants of health. In the second section, we review some theories of the moral status of health inequalities. (...) Rather than a complete outline of the debate, we single out those theories that rest on the principle of equality of opportunity and analyze the consequences of DOHaD and epigenetics for these particular conceptions of justice. We argue that DOHaD and epigenetics reshape the conceptual distinction between natural and acquired traits on which these theories rely and might provide important policy tools to tackle unjust distributions of health. (shrink)

Recent findings in epigenetics have been attracting much attention from social scientists and bioethicists because they reveal the molecular mechanisms by which exposure to socioenvironmental factors, such as pollutants and social adversity, can influence the expression of genes throughout life. Most surprisingly, some epigenetic modifications may also be heritable via germ cells across generations. Epigenetics may be the missing molecular evidence of the importance of using preventive strategies at the policy level to reduce the incidence and prevalence of common diseases. (...) But while this “policy translation” of epigenetics introduces new arguments in favor of public health strategies and policy-making, a more “clinical translation” of epigenetics is also emerging. It focuses on the biochemical mechanisms and epigenetic variants at the origin of disease, leading to novel biomedical means of assessing epigenetic susceptibility and reversing detrimental epigenetic variants. In this paper, we argue that the impetus to create new biomedical interventions to manipulate and reverse epigenetic variants is likely to garner more attention than effective social and public health interventions and therefore also to garner a greater share of limited public resources. This is likely to happen because of the current biopolitical context in which scientific findings are translated. This contemporary neoliberal “regime of truth,” to use a term from Michel Foucault, greatly influences the ways in which knowledge is being interpreted and implemented. Building on sociologist Thomas Lemke's Foucauldian “analytics of biopolitics” and on literature from the field of science and technology studies, we present two sociological trends that may impede the policy translation of epigenetics: molecularization and biomedicalization. These trends, we argue, are likely to favor the clinical translation of epigenetics—in other words, the development of new clinical tools fostering what has been called “personalized” or “precision” medicine. In addition, we argue that an overemphasized clinical translation of epigenetics may further reinforce this biopolitical landscape through four processes closely related to neoliberal pathways of thinking: the internalization and isolation of socioenvironmental determinants of health and increased opportunities for commodification and technologicalization of health care interventions. (shrink)

The rise of molecular epigenetics over the last few years promises to bring the discourse about the sociality and susceptibility to environmental influences of the brain to an entirely new level. Epigenetics deals with molecular mechanisms such as gene expression, which may embed in the organism “memories” of social experiences and environmental exposures. These changes in gene expression may be transmitted across generations without changes in the DNA sequence. Epigenetics is the most advanced example of the new postgenomic and context-dependent (...) view of the gene that is making its way into contemporary biology. In my article I will use the current emergence of epigenetics and its link with neuroscience research as an example of the new, and in a way unprecedented sociality of contemporary biology. After a review of the most important developments of epigenetic research, and some of its links with neuroscience, in the second part I reflect on the novel challenges that epigenetics presents for the social sciences for a re-conceptualization of the link between the biological and the social in a postgenomic age. Although epigenetics remains a contested, hyped, and often uncritical terrain, I claim that especially when conceptualized in broader non-genecentric frameworks,. (shrink)

The purpose of this paper is to discuss the responsibility of AI experts for guiding the development of AI in a desirable direction. More specifically, the aim is to answer the following research question: To what extent are AI experts responsible in a forward-looking way for effects of AI technology that go beyond the immediate concerns of the programmer or designer? AI experts, in this paper conceptualised as experts regarding the technological aspects of AI, have knowledge and control of AI (...) technology that non-experts do not have. Drawing on responsibility theory, theories of the policy process, and critical algorithm studies, we discuss to what extent this capacity, and the positions that these experts have to influence the AI development, make AI experts responsible in a forward-looking sense for consequences of the use of AI technology. We conclude that, as a professional collective, AI experts, to some extent, are responsible in a forward-looking sense for consequences of use of AI technology that they could foresee, but with the risk of increased influence of AI experts at the expense of other actors. It is crucial that a diversity of actors is included in democratic processes on the future development of AI, but for this to be meaningful, AI experts need to take responsibility for how the AI technology they develop affects public deliberation. (shrink)

Genetic information affects patients’ families differently than other types of medical information. Family members might have a compelling interest in patients’ genetic information, but who counts as family? In this article, I assess current definitions of family and propose a pluralistic account of family, which comprises definitions of family based on biomedical, legal, and functional aspects. Respectful of various forms of family, a pluralistic account includes those with interests in genetic information. Finally, I apply it in the hypothetical case of (...) a sperm donor with a hereditary condition. (shrink)

An increase in global violence has forced the displacement of more than 70 million people, including 26 million refugees and 3.5 asylum seekers. Refugees and asylum seekers face serious socioeconomic and healthcare barriers and are therefore particularly vulnerable to physical and mental health risks, which are sometimes exacerbated by immigration policies and local social discriminations. Calls for a strong evidence base for humanitarian action have encouraged conducting research to address the barriers and needs of refugees and asylum seekers. Given the (...) role of epigenetics factors to mediate the effect of psychological and environmental exposures, epigenetic modifications have been used as biomarkers for life adversity and disease states. Therefore, epigenetic research can be potentially beneficial to address some of the issues associated with refugees and asylum seekers. Here, we review the value of previous and ongoing epigenetic studies with traumatized populations, explore some of the ethical challenges associated with epigenetic research with refugees and asylees and offer suggestions to address or mitigate some of these challenges. Researchers have an ethical responsibility to implement strategies to minimize the harms and maximize the short and long-term benefits to refugee and asylee participants. (shrink)

Epigenetic markers could potentially be used for risk assessment in risk-stratified population-based cancer screening programmes. Whereas current screening programmes generally aim to detect existing cancer, epigenetic markers could be used to provide risk estimates for not-yet-existing cancers. Epigenetic risk-predictive tests may thus allow for new opportunities for risk assessment for developing cancer in the future. Since epigenetic changes are presumed to be modifiable, preventive measures, such as lifestyle modification, could be used to reduce the risk of cancer. Moreover, epigenetic markers (...) might be used to monitor the response to risk-reducing interventions. In this article, we address ethical concerns related to personal responsibility raised by epigenetic risk-predictive tests in cancer population screening. Will individuals increasingly be held responsible for their health, that is, will they be held accountable for bad health outcomes? Will they be blamed or subject to moral sanctions? We will illustrate these ethical concerns by means of a Europe-wide research programme that develops an epigenetic risk-predictive test for female cancers. Subsequently, we investigate when we can hold someone responsible for her actions. We argue that the standard conception of personal responsibility does not provide an appropriate framework to address these concerns. A different, prospective account of responsibility meets part of our concerns, that is, concerns about inequality of opportunities, but does not meet all our concerns about personal responsibility. We argue that even if someone is responsible on grounds of a negative and/or prospective account of responsibility, there may be moral and practical reasons to abstain from moral sanctions. (shrink)

We tend to hold people responsible for their choices, but not for what they can’t control: their nature, genes or biological makeup. This thought-provoking collection redefines the boundaries of moral responsibility. It shows how epigenetics reveals connections between our genetic make-up and our environment. The essays challenge established notions of human nature and the nature/nurture divide and suggest a shift in focus from individual to collective responsibility. Uncovering the links between our genetic makeup, environment and experiences, this is an important (...) contribution to ongoing debates on ethics, genetics and responsibility. (shrink)

Emerging fields of science often create new challenges for ethics and law. In assessing the broader societal implications of scientific discoveries, a reasonable analytical starting point is determining how the discoveries compare with existing science. If the new field is substantially similar to an established one, then the ethical and legal analyses are likely to be comparable. On the other hand, if the new scientific developments are extraordinary in kind or degree, then a new analytical framework and new approaches to (...) ethics and law may be necessary. (shrink)

Epigenetics reveals the biological mechanisms underlying the reproduction and even the transmission of social inequalities in health. It also emphasizes the complexity of factors involved in the development of some diseases. This complexity raises new difficulties for theories of justice. Is the equal opportunities theory the most appropriate to solve these difficulties? I demonstrate that epigenetics requires a multifactor model of justice—one that is grounded on principles of fairness, impartiality, and environmental and intergenerational justice. Depending on the point of view (...) assumed (i.e., individual, population-based, or intergenerational), the relevant principle of justice is different. (shrink)

This article offers an overview of the risks related to some representations of epigenetics in the process of making social and medical recommendations. After exploring different representations of epigenetics in popular literature and media discourses, I identify some of the premature conclusions that could emerge from such discourses, stressing issues related to parental responsibility—especially as they relate to women—regarding the transmission of epigenetic marks. I then propose some epistemological considerations regarding developmental biology in order to draw a more nuanced picture (...) of epigenetic responsibility. I argue that such considerations are important to clarify our general understanding of epigenetic research as well as its potential translation outside the scientific area. (shrink)

Social scientists have shown that scientific characterizations of the egg and the sperm are shaped by gender stereotypes and cultural values. How have such characterizations been transformed by a recent embrace of -omics, when studies of reproduction increasingly go beyond genomics to incorporate proteomics, transcriptomics, exposomics, and other -omics perspectives? Scientists studying reproduction and analyzing eggs, sperm, and embryos are in some ways reimagining the roles, identities, and functions of gametes as fundamentally shaped by other molecular entities and environments. Such (...) relational understandings of substances and processes, however, continue to operate through a teleology that often conscripts more nuanced -omics reflection into familiar genomic visions of sex and reproduction. While ideas of the gene as an alienable object may be unraveling, -omics efforts to go beyond the egg and the sperm are frequently constricted by an understanding of reproduction that remains tied to individualized bodies and by a genomically infused interpretation of the gamete as life itself. (shrink)