Ulf Görman

Authenticity, depression, and deep brain stimulation

In 2005 the journal Neuron published Mayberg et al.’s (2005) pioneering study on deep brain stimulation (DBS) targeting treatment-refractory major depressive disorder (MDD). Since then a handful of studies, in total encompassing little over 50 patients, have been published (Aouizerate et al., 2005; Jimenez et al., 2005; Mayberg et al., 2005; Kuhn et al., 2007; Lozano et al., 2008; Neimat et al., 2008; Schlaepfer et al., 2008; Malone et al., 2009; Bewernick et al., 2010; Sartorius et al., 2010) and larger trials are underway (Bell et al., 2009). A common ethical concern voiced when DBS is used for a psychiatric disorder such as MDD is that the stimulation specifically targets cognition, mood, and behavior; elements which are closely linked to the patients personality. Obviously, this holds true also for other antidepressants such as psychotherapy and medication. Apart from that these standard therapies have been of no avail for the patients considered for MDD DBS, one could still ask whether their potential to alter cognition, mood, and behavior, differ - with regard to ethical concerns - from that of DBS. Further, the relevant ethical concern is arguably not what functions the stimulation are intended to alter, as in psychiatric indications, but rather what functions that could be altered by DBS. Unintended alterations of cognition, mood and behaviour could occur as a consequence of both psychiatric and motoric DBS. Thus, potential alterations of personality seem, apart from the historical stigma connected with the former, to be relevant for most DBS indications. A lot of work remains to be done before a comprehensive analysis of these concerns could be presented. Our contribution is to introduce one question relevant to the intersection of DBS, MDD, and the notion(s) of authenticity.

Personalised nutrition : status and perspectives

Personalised, genotype-based nutrition is a concept that links genotyping with specific nutritional advice in order to improve the prevention of nutrition-associated, chronic diseases. This review describes the current scientific basis of the concept and discusses its problems. There is convincing evidence that variant genes may indeed determine the biological response to nutrients. The effects of single-gene variants on risk or risk factor levels of a complex disease are, however, usually small and sometimes inconsistent. Thus, information on the effects of combinations of relevant gene variants appears to be required in order to improve the predictive precision of the genetic information. Furthermore, very few associations between genotype and response have been tested for causality in human intervention studies, and little is known about potential adverse effects of a genotype-derived intervention. These issues need to be addressed before genotyping can become an acceptable method to guide nutritional recommendations.

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.

Bioethical considerations for human nutrigenomics.

This article gives an overview of the ethical issues in nutrigenomics research and personalized nutrition. The principles of research ethics, i.e., autonomy, beneficence, nonmalfeasance, and justice, are challenged by rapidly growing cross-border research activities utilizing existing and upcoming biobanks for studies of the interaction of genes with diet on risk of common diseases. We highlight the ethical issues, some unresolved, in international collaborative projects of which researchers should be aware. Personalized nutrition (tailoring diet on the basis of genotype) is one possible application of nutrigenomics research. However, until the scientific evidence concerning diet-gene interactions is much more robust, the provision of personalized dietary advice on the basis of specific genotype remains questionable. From the ethical and social perspective, nutrigenomics offers significant opportunities to improve public health by enhancing understanding of the mechanisms through which diet can be used to reduce the risk of common polygenic diseases.

Ethical issues raised by personalized nutrition based on genetic information.

Four principles are taken as basis for the ethical analysis: autonomy, nonmaleficence, beneficence, and justice. Health is understood as a limited aspect of wellbeing. Food is understood as an important aspect of wellbeing, not only an instrument for health. Modern society is characterized by a tendency to identify wellbeing with external rather than subjective circumstances, to identify wellbeing with health, and to create exaggerated health expectations. Based upon this understanding, aspects of personalized nutrition are discussed: genetic testing, counselling, and development of special dietary products. Today the predictive value of genetic tests for personal nutrition is limited, and experimental at best. Recommendations for the future: Personalized nutrition must be based on solid knowledge. Phenotypic analyses should be used when adequate. When a genetic test can have a clear advantage, this should be preferred. Opportunistic screening should only be used when clearly beneficial. Specially trained persons should collect information from genetic tests and carry through councelling on a personal basis. Marketing of genetic tests directly sold to the public should be discouraged. Development of special products for personalized nutrition may be necessary in some cases. However, this may also lead to a medicalization of diet.

Guide and Position of the International Society of Nutrigenetics/Nutrigenomics on Personalized Nutrition: Part 2 - Ethics, Challenges and Endeavors of Precision Nutrition

Nutrigenetics considers the influence of individual genetic variation on differences in response to dietary components, nutrient requirements and predisposition to disease. Nutrigenomics involves the study of interactions between the genome and diet, including how nutrients affect the transcription and translation process plus subsequent proteomic and metabolomic changes, and also differences in response to dietary factors based on the individual genetic makeup. Personalized characteristics such as age, gender, physical activity, physiological state and social status, and special conditions such as pregnancy and risk of disease can inform dietary advice that more closely meets individual needs. Precision nutrition has a promising future in treating the individual according to their phenotype and genetic characteristics, aimed at both the treatment and prevention of disease. However, many aspects are still in progress and remain as challenges for the future of nutrition. The integration of the human genotype and microbiome needs to be better understood. Further advances in data interpretation tools are also necessary, so that information obtained through newer tests and technologies can be properly transferred to consumers. Indeed, precision nutrition will integrate genetic data with phenotypical, social, cultural and personal preferences and lifestyles matters to provide a more individual nutrition, but considering public health perspectives, where ethical, legal and policy aspects need to be defined and implemented.

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.

Food and health: individual, cultural, or scientific matters?

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.

Values at stake: autonomy, responsibility, and trustworthiness in relation to genetic testing and personalized nutrition advice

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.

Some ethical issues raised by personalized nutrition

This short article is a summary of a lecture at the 3rd International Nutrigeonomics Conference ”From Nutrigenomics to Personalized Nutrition”. Starting points are the principles in biomedical ethics, the relation between health and welfare, and the relation between food, personalized nutrition and quality of life. The following aspects of personalized nutrition are discussed: genetic testing, genetic counselling, and products fabricated for personalized nutrition.