Context
We are currently conducting a study, A Foundation for Evidence-Based Management of Nutrigenomics Expectations and ELSIs, aimed at laying an empirical foundation that could discern and anticipate the socio-ethical issues associated with nutrigenomics/nutrigenetics research (hereafter: "NGx") and its potential applications. Our results show that:
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The concentration of nutrigenetics clinical studies in Europe and North America on “white” or Caucasian participants raises concerns in terms of equity and justice in biomedical research and global health;
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Unclear descriptions of population samples in scientific publications are problematic as they do not allow to evaluate the external validity of study results, namely to what populations or subgroups these results may be relevant;
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The underrepresentation of ethnic minorities, elderly people and children in nutrigenetics clinical research is both an ethical and scientific issue that could lead to discrimination against those populations;
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Both the underreporting of methodological limitations in scientific publications of nutrigenetics findings, as well as the underrepresentation of certain groups of the population in nutrigenetics research, can lead to unrealistic or premature claims about the scope of study results and the benefits of potential clinical applications.
In addition, other potential ethical issues related to NGx research and to the development of its potential applications have been discussed by some authors, such as the potential burden of the responsibility for an individual to be compliant with a personalized diet based on their genetic profile, the risks of discrimination of the non-compliant-individuals, the potential stigmatization of at-risk and healthy people, the issues raised by individual access to nutrigenetics tests and services or to specific foods and nutriments, including the risks linked to the direct commercialization of these tests (Ghosh, 2009; Godard and Hurlimann, 2009; Chadwick, 2004).
Our goal
In order to disseminate our findings about the ethical issues at stake in NGx, we aim to go beyond publishing our study results in scientific journals and presenting them at conferences. A broad dissemination of our study results could impact both professional and public attitudes by increasing awareness of the ethical but also scientific issues at stake. In this project, entitled Ethically-sound application and dissemination of scientific knowledge: the case of nutrigenomics, we design, implement and evaluate a knowledge dissemination strategy using an arts-based medium and the Internet for disseminating our findings to a very specific audience: researchers in the field of NGx, researchers in research ethics, and members of research ethics boards.
Method
We propose various knowledge dissemination activities although our main dissemination intervention is based on the use of Internet and a combination of texts and illustrations that are intended to reinforce key messages resulting from our previous study, A Foundation for Evidence-Based Management of Nutrigenomics Expectations and ELSIs. Our targeted audience is clinical researchers in the field of NGx as well as research ethics researchers, and members of research ethics boards, but universal access will be granted to our main intervention web pages from a link on the website of our research group OMICS-ETHICS. We will seek visitors’ comments for each of the four themes on which our research results from our previous study focus (i.e.: geographic location of nutrigenetics clinical studies, age and origin of participants in nutrigenetics clinical research, risks of biohype and content of scientific publications reporting study findings in nutrigenetics clinical research).
The evaluation of the effectiveness of the combination texts-illustrations as a mode of dissemination of our study results will be based on three criteria: knowledge acquisition, change in attitudes and change in practice.
References
Chadwick, R. Nutrigenomics, individualism and public health. Proceedings of the Nutrition Society 2004; 63: 161-66
Gerde, VW., Foster, RS. X-Men Ethics: Using Comic Books to Teach Business Ethics. Journal of Business Ethics 2008; 77: 245–258.
Ghosh, D. Future Perspectives of Nutrigenomics Foods: Benefits vs. Risks. Indian J
Biochem Biophys 2009; 46: 31-36.
Godard, B., Hurlimann, T. Nutrigenomics for Global Health: Ethical Challenges for Underserved Populations. Curr Pharmacogenomics Person Med 2009; 7 : 205-14.
Green, M.J., Myers, K.R. Graphic medicine: use of comics in medical education and patient care. BMJ 2010; 340: 574-77.
Joffe, H. The Power of Visual Material: Persuasion, Emotion and Identification. Diogenes 2008; 55(84): 84-93. DOI: 10.1177/0392192107087919
Mayer, R.E., Massa, L.J. Three Facets of Visual and Verbal Learners: Cognitive Ability, Cognitive Style, and Learning Preference. Journal of Educational Psychology 2003; 95(4): 833–46.
Close
Lafrenière, D., Menuz, V., Hurlimann, T., Godard, B. "Knowledge Dissemination Interventions: A Literature Review" Journal of Community Genetics (Submitted).
: Béatrice Godard, Thierry Hurlimann, Darquise Lafrenière, Vincent Menuz, Julie Robitaille, Marie-Claude Vohl
: Canadian Institutes of Health Research (CIHR)
