Human genetic research, race, ethnicity and the labeling of populations: recommendations based on an interdisciplinary workshop in Japan.
BACKGROUND
A challenge in human genome research is how to describe the populations being studied. The use of improper and/or imprecise terms has the potential to both generate and reinforce prejudices and to diminish the clinical value of the research. The issue of population descriptors has not attracted enough academic attention outside North America and Europe. In January 2012, we held a two-day workshop, the first of its kind in Japan, to engage in interdisciplinary dialogue between scholars in the humanities, social sciences, medical sciences, and genetics to begin an ongoing discussion of the social and ethical issues associated with population descriptors.


CONCLUSIONS
Through the interdisciplinary dialogue, we confirmed that the issue of race, ethnicity and genetic research has not been extensively discussed in certain Asian communities and other regions. We have found, for example, the continued use of the problematic term, "Mongoloid" or continental terms such as "European," "African," and "Asian," as population descriptors in genetic studies. We, therefore, introduce guidelines for reporting human genetic studies aimed at scientists and researchers in these regions.


CONCLUSIONS
We need to anticipate the various potential social and ethical problems entailed in population descriptors. Scientists have a social responsibility to convey their research findings outside of their communities as accurately as possible, and to consider how the public may perceive and respond to the descriptors that appear in research papers and media articles.
Institute for Research in Humanities, Kyoto University, Yoshidahonmachi, Sakyo-ku, Kyoto 606-8501, Japan. yasuko@zinbun.kyoto-u.ac.jp.
Yasuko
Y
Takezawa
Kazuto
K
Kato
Hiroki
H
Oota
Timothy
T
Caulfield
Akihiro
A
Fujimoto
Shunwa
S
Honda
Naoyuki
N
Kamatani
Shoji
S
Kawamura
Kohei
K
Kawashima
Ryosuke
R
Kimura
Hiromi
H
Matsumae
Ayako
A
Saito
Patrick E
PE
Savage
Noriko
N
Seguchi
Keiko
K
Shimizu
Satoshi
S
Terao
Yumi
Y
Yamaguchi-Kabata
Akira
A
Yasukouchi
Minoru
M
Yoneda
Katsushi
K
Tokunaga
D035843:Biomedical Research / Q000941:ethics; D005006:Ethnicity / Q000235:genetics*; D005260:Female; D036281:Genetic Research / Q000941:ethics*; D017408:Guidelines as Topic; D016045:Human Genome Project / Q000941:ethics; D006801:Humans; D033183:Interdisciplinary Communication; D007564:Japan; D008297:Male; D011287:Prejudice; D044469:Racial Groups / Q000208:ethnology / Q000235:genetics*; D012108:Research Personnel / Q000941:ethics; D058028:Research Report / Q000592:standards*; D009626:Terminology as Topic