Hurlimann T, Stenne R, Menuz V, Godard B
Department of Social and Preventive Medicine, Bioethics Programmes, Faculty of Medicine, University of Montreal, Montreal, Que., Canada.
J Nutrigenet Nutrigenomics. 2011;4(6):322-43. doi: 10.1159/000334853. Epub 2012 Jan 31.
BACKGROUND/AIMS: There are compelling reasons to ensure the participation of ethnic minorities and populations of all ages worldwide in nutrigenetics clinical research. If findings in such research are valid for some individuals, groups, or communities, and not for others, then ethical questions of justice--and not only issues of methodology and external validity--arise. This paper aims to examine inclusion in nutrigenetics clinical research and its scientific and ethical challenges.
In total, 173 publications were identified through a systematic review of clinical studies in nutrigenetics published between 1998 and 2007. Data such as participants' demographics as well as eligibility criteria were extracted.
There is no consistency in the way participants' origins (ancestry, ethnicity, or race) and ages are described in publications. A vast majority of the studies identified was conducted in North America and Europe and focused on 'white' participants. Our results show that pregnant women (and fetuses), minors, and the elderly (≥ 75 years old) remain underrepresented.
Representativeness in nutrigenetics research is a challenging ethical and scientific issue. Yet, if nutrigenetics is to benefit whole populations and be used in public and global health agendas, fair representation as well as clear descriptions of participants in publications are crucial.
背景/目的：有令人信服的理由确保全球范围内少数民族和所有年龄段人群参与营养遗传学临床研究。如果此类研究的结果对某些个体、群体或社区有效，而对其他个体、群体或社区无效，那么就会出现正义的伦理问题——而不仅仅是方法学和外部有效性问题。本文旨在探讨营养遗传学临床研究中的纳入情况及其科学和伦理挑战。
通过对1998年至2007年发表的营养遗传学临床研究进行系统综述，共识别出173篇出版物。提取了参与者的人口统计学数据以及纳入标准等数据。
出版物中描述参与者来源（祖先、种族或民族）和年龄的方式不一致。所识别的绝大多数研究是在北美和欧洲进行的，并且侧重于“白人”参与者。我们的结果表明，孕妇（和胎儿）、未成年人以及老年人（≥75岁）的代表性仍然不足。
营养遗传学研究中的代表性是一个具有挑战性的伦理和科学问题。然而，如果营养遗传学要使整个人口受益并用于公共和全球健康议程，那么公平的代表性以及出版物中对参与者的清晰描述至关重要。
