The objectives of Food4Me work package 5 included a baseline assessment of the ethical and legal aspects of personalised nutrition at the start of the project in 2011, as well as a final assessment at the end of the project (2015), taking into account results achieved in other work packages. The initial assessment made a number of ethical issues visible, most of them relating to the consumer of personalised nutrition service. The results depicted in this publication indicate that many of the questions raised in relation to these issues remain unsolved, and in some cases they seem to be neglected in relation to the services offered by internet companies.
Consumers often have a positive attitude to the option of receiving personalized nutrition advice based upon genetic testing, since the prospect of enhancing or maintaining one’s health can be perceived as empowering. Current direct-to-consumer services over the Internet, however, suffer from a questionable level of truthfulness and consumer protection, in addition to an imbalance between far-reaching promises and contrasting disclaimers. Psychological and behavioral studies indicate that consumer acceptance of a new technology is primarily explained by the end user’s rational and emotional interpretation as well as moral beliefs. Results from such studies indicate that personalized nutrition must create true value for the consumer. Also, the freedom to choose is crucial for consumer acceptance. From an ethical point of view, consumer protection is crucial, and caution must be exercised when putting nutrigenomic-based tests and advice services on the market. Current Internet offerings appear to reveal a need to further guaranty legal certainty by ensuring privacy, consumer protection and safety. Personalized nutrition services are on the borderline between nutrition and medicine. Current regulation of this area is incomplete and undergoing development. This situation entails the necessity for carefully assessing and developing existing rules that safeguard fundamental rights and data protection while taking into account the sensitivity of data, the risks posed by each step in their processing, and sufficient guarantees for consumers against potential misuse.
This article discusses the prospects and limitations of the scientific basis for offering personalized nutrition advice based upon individual genetic information. Two divergent scientific positions are presented, with an ethical comment. The crucial question is whether the current knowledge base is sufficiently strong for taking an ethically responsible decision to offer personalized nutrition advice based upon gene–diet–health interaction. According to the first position, the evidence base for translating the outcomes of nutrigenomics research into personalized nutritional advice is as yet immature. There is also limited evidence that genotype-based dietary advice will motivate appropriate behavior changes. Filling the gaps in our knowledge will require larger and better randomized controlled trials. According to the second position, personalized nutrition must be evaluated in relation to generally accepted standard dietary advice—partly derived from epidemiological observations and usually not proven by clinical trials. With personalized nutrition, we cannot demand stronger evidence. In several specific cases of gene–diet interaction, it may be more beneficial for individuals with specific genotypes to follow personalized advice rather than general dietary recommendations. The ethical comment, finally, considers the ethical aspects of deciding how to proceed in the face of such uncertainty. Two approaches for an ethically responsible way forward are proposed. Arguing from a precautionary approach, it is suggested that personalized dietary advice should be offered only when there is strong scientific evidence for health effects, followed by stepwise evaluation of unforeseen behavioral and psychological effects. Arguing from theoretical and applied ethics as well as psychology, it is also suggested that personalized advice should avoid paternalism and instead focus on supporting the autonomous choice of each person.
Within a modern legitimacy paradigm of moral education, autonomy has traditionally been ascribed a legitimating function in relation to moral education. Moral education is thought to be legitimate as long as it is conceptualized and practiced as aiming towards autonomy. The normative relation arising between autonomy and moral education is thereby expressed in the pedagogical paradox, based on a pedagogical principle which assumes that freedom restraining pedagogical actions can facilitate autonomy as an aspect of moral maturity. Ethically, the pedagogical paradox is expressed by an understanding of temporal restrictions of freedom as justified by an overarching goal of autonomy. Hence, beyond the assumption of a causal pedagogical relation, there is also a statement of a normative relation between autonomy and moral education. This dissertation investigates the normative relation between autonomy and moral education, as it is established within the modern legitimacy paradigm of moral education, but challenged by concepts of autonomy which understand autonomy, not as opposed to dependence, but within dependencies of various kinds. This task contains two interrelated questions: Can the legitimacy of moral education be based on autonomy as an educational goal? And in what sense is autonomy a legitimate educational goal? A clarification of the premises of the modern legitimacy paradigm of moral education renders its basic assumption of compensating opposition as problematic. Following a characterization of autonomy as an extensive and blurred pedagogical goal and a description of moral education as situations characterized by mutual dependencies, a coherence oriented justification model is suggested. It advocates legitimacy as constituted in an orientation towards a coherent relation between pedagogically articulated claims and philosophically articulated ideals of moral education. Moral education is described from an ethical perspective in terms of two constituting claims: asymmetry and direction. These two claims are, based on findings from childhood research, further identified as adequate claims, insofar as they are understood, in turn, as dialectic and risky. The claims of dialectic asymmetry and risky direction are then related to various concepts of autonomy. This results in a concept of autonomy as a competent way of dealing with inter-subjective and intra-subjective dependence. Aspects, such as mutual respect and cooperation, search for meaning and trust, and a balance between slowness and spontaneity, are identified as essential for a concept of autonomy coherent with adequate claims of moral education. The application of a coherence oriented justification model turns autonomy as an educational goal into an ideal within which moral education is taking place, rather than a remote goal towards which education is striving. While the pedagogical paradox is depicted as an irrelevant basis for a legitimate normative relation between autonomy and moral education, any pedagogical claims concerning autonomy as an educational ideal must be very modest.
Within a liberal and democratic setting, education normally consists of a process of promoting increased self-determination or autonomy. By facilitating and encouraging self-determination, we are thereby deemed to be educating for freedom. Yet, paradoxically, to educate means also to restrict freedom. Education may be viewed as a series of planned interventions into someone’s free behaviour, norms and habits according to certain ultimate intentions and ideals. The legitimacy of such freedom-restricting educational interventions is deemed morally justified as long as a balance is maintained toward the ends of autonomy and freedom. This chapter examines the relationship between means and ends in educating for freedom. Here, autonomy is viewed, not as opposed to heteronomy, rather as in relationship to dependencies of various kinds. It is argued that education for freedom is more plausible if understood as education within autonomy, instead of simply education toward autonomy. These theoretical arguments are illustrated by a discussion of the common didactic practice in Swedish schools of contract-signing in connection with individual study plans. The question is asked in what sense contract-signing may be a legitimate didactic means within a context of education for freedom.
Antologin 'Erziehung in der europäischen Literatur des 19. Jahrhunderts' tar upp europeiska skönlitterära verk från 1800-talet och diskuterar deras förståelse av fostran. Kapitlet 'Erziehung am Rande der Gesellschaft. Emilie Flygare-Carléns Die Rose von Tistelön' presententerar ett svenskt verk. Handlingen utspelar sig bland Bohusläns fattiga befolkning och tematiserar de hårda livsvillkoren. I centrum står smugglardotters uppväxt och fostran. Denna syftar till att förmedla borgerliga värden till den kriminella familjens barn som lever avskilt på Tistelön. Antologibidraget diskuterar forstran utifrån ett periferi-centrum tema som kopplas till författarinnans biografi.
In personalized nutrition, food is a tool for good health, implying an instrumental relationship between food and health. Food receives a secondary value, while health would appear to be a descriptive biological concept. This article gives an introduction to cultural understandings of food and health. The wider definition of food and health is explored in relation to the commonly used scientific approach that tends to take a more reductionist approach to food and health. The different discourses on food and health are being discussed in relation to ethical aspects of personalized nutrition. The success of personalized nutrition is likely dependent upon the ability to integrate the scientific approach with everyday cultural, emotional, ethical, and sensual understandings of food. Health theories can be divided into two principal rival types—biostatistical and holistic. Biostatistical focuses on survival, while holistic focuses on ability as a precondition for health. Arguments in favor of a holistic and individualistic theory of health and illness are presented. This implies a focus on the ability of the individual to realize his or her “vital goals.” A holistic and individualistic health concept may have a reinforcing effect on the individualized approach in personalized nutrition. It allows focus on individual health premises and related dietary means of health promotion, as well as an individualized perspective on the objectives of health promotion. An individualistic notion of health also indicates that people with high levels of vital goals benefit more easily. To reach beyond these groups is likely difficult. This potential injustice should be balanced with global preventive medical programs.
The idea of personalized nutrition (PN) is to give tailored dietary advice based on personal health-related data, i.e. phenotoype, genotype, or lifestyle. PN may be seen as part of a general trend towards personalised health care and currently various types of business models are already offering such services in the market. This paper explores ethical issues of PN by examining how PN services within the contextual environment of four future scenarios about health and nutrition in Europe might affect aspects of social justice according to Martha Nussbaum’s capability approach. The scenarios have been created by a mixed group of stakeholders and experts in three consecutive workshops. This resulted in the definition of four future scenarios within a scenario space consisting of two variables: the ‘logic of health care systems’ and ‘conception of health’. Within each scenario, PN is likely to play a more or less important role in improving health by influencing food consumption patterns in society. Nussbaum’s capability approach implies a concept of social justice as a function of a minimum standard of human dignity. This denotes an account for equality in terms of a minimum of entitlements. However, also the ability of achieving individual objectives is essential for social justice. Personalisation advice in health and food consumption patterns, as aimed for by PN, is therefore acceptable provided a minimum of entitlements is guaranteed to all members of a society, and at the same time freedom concerning personal preferences is respected. Potential variation of how different people might benefit from PN should therefore be consistent with the minimum required as defined by the list of capabilities.
Personalized nutrition has the potential to enhance individual health control. It could be seen as a means to strengthen people’s autonomy as they learn more about their personal health risks, and receive dietary advice accordingly. We examine in what sense personalized nutrition strengthens or weakens individual autonomy. The impact of personalized nutrition on autonomy is analyzed in relation to responsibility and trustworthiness. On a societal level, individualization of health promotion may be accompanied by the attribution of extended individual responsibility for one’s health. This constitutes a dilemma of individualization, caused by a conflict between the right to individual freedom and societal interests. The extent to which personalized nutrition strengthens autonomy is consequently influenced by how responsibility for health is allocated to individuals. Ethically adequate allocation of responsibility should focus on prospective responsibility and be differentiated with regard to individual differences concerning the capacity of adults to take responsibility. The impact of personalized nutrition on autonomy also depends on its methodological design. Owing to the complexity of information received, personalized nutrition through genetic testing (PNTGT) is open to misinterpretation and may not facilitate informed choices and autonomy. As new technologies, personalized nutrition and PNTGT are subject to issues of trust. To strengthen autonomy, trust should be approached in terms of trustworthiness. Trustworthiness implies that an organization that develops or introduces personalized nutrition can show that it is competent to deal with both the technical and moral dimensions at stake and that its decisions are motivated by the interests and expectations of the truster.