TY - JOUR
T1 - Human genetic research, race, ethnicity and the labeling of populations
T2 - Recommendations based on an interdisciplinary workshop in Japan
AU - Takezawa, Yasuko
AU - Kato, Kazuto
AU - Oota, Hiroki
AU - Caulfield, Timothy
AU - Fujimoto, Akihiro
AU - Honda, Shunwa
AU - Kamatani, Naoyuki
AU - Kawamura, Shoji
AU - Kawashima, Kohei
AU - Kimura, Ryosuke
AU - Matsumae, Hiromi
AU - Saito, Ayako
AU - Savage, Patrick E.
AU - Seguchi, Noriko
AU - Shimizu, Keiko
AU - Terao, Satoshi
AU - Yamaguchi-Kabata, Yumi
AU - Yasukouchi, Akira
AU - Yoneda, Minoru
AU - Tokunaga, Katsushi
N1 - Funding Information:
Prior to the two-day conference, “The Interface of the Humanities and Genomics, Part II”, Part I was held in January 2011 in Kyoto, and another conference focusing on “Okinawans” was held in March 2011 in Okinawa. These events, as well as the one in Tokyo in 2012, are part of the collaborative research project, “A Japan-Based Global Study of Racial Representations,” the Grant-in-Aid for Scientific Research (S) No. 22222003 (principal investigator: Yasuko Takezawa), generously funded by the Japan Society for the Promotion of Science. We would like to extend our appreciation to all other scholars including those who came from abroad to Japan to take part in previous events and contribute to these discussions. We also thank Chiori Goto and Yuka Kanno for their editorial support as well as participation at the conference and Mika Ko and Wataru Kusaka for participation at the workshop.
PY - 2014/4/23
Y1 - 2014/4/23
N2 - 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. Discussion. 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. Conclusion: 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.
AB - 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. Discussion. 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. Conclusion: 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.
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U2 - 10.1186/1472-6939-15-33
DO - 10.1186/1472-6939-15-33
M3 - Article
C2 - 24758583
AN - SCOPUS:84900827660
SN - 1472-6939
VL - 15
JO - BMC Medical Ethics
JF - BMC Medical Ethics
IS - 1
M1 - 33
ER -