Personaliserad nutrition och etik : en empirisk studie av svenska konsumenters inställning till gentester för hälsans skull

Abstract In this thesis I address some of the ethical issues that arise in relation to consumers and personalised dietary advice made on the basis of genetic information. By carrying out two empirical studies, I wanted to find out what Swedish consumers think about personalised nutrition, and how they reason regarding risks, possible value conflicts, and benefits that may arise from implementing the concept. The results of the empirical studies showed that implementation of personalised nutrition was perceived as involving both benefits and a variety of risks and difficulties, which raises a range of issues, including ethical ones. A majority of the respondents and informants nonetheless had a positive attitude towards personalised nutrition and would also be willing to undergo genetic testing for personalised dietary advice. The perceived risks did not appear to have an important impact on the willingness to undergo testing, as these risks were often seen as manageable. The results suggest that respondents and informants were motivated predominantly by the value they placed on good health. Furthermore, the informants’ understanding of health included not only the health of the physical body, but also psychological well-being and quality of life. This understanding of the concept of health is thus largely congruent with that of subjective theories of health, which have been criticised for overemphasising individuals’ responsibility for their own health and for contributing to a wider medicalisation of everyday life

Ethical considerations in relation to personalised nutrition : An overview of Work Package 5, with respect to ethics

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

Ska generna styra vad vi äter?

This article gives an overview of some ethical problems raised in connection to nutritional genomics, especially the use of knowledge from nutrigenomics as a basis for personalised nutrition after a genetic test

Personalised nutrition : paving a way to better population health

A White Paper from the Food4Me project. Written by the project partners. Edited and produced by the European Food Information Council, Belgium March 2015

Do we know enough? A scientific and ethical analysis of the basis for genetic-based personalized nutrition

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

Consumers on the Internet: ethical and legal aspects of commercialization of personalized nutrition

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