Human genetic research, race, ethnicity and the labeling of populations: Recommendations based on an interdisciplinary workshop in Japan

Yasuko Takezawa, Kazuto Kato, Hiroki Oota, Timothy Caulfield, Akihiro Fujimoto, Shunwa Honda, Naoyuki Kamatani, Shoji Kawamura, Kohei Kawashima, Ryosuke Kimura, Hiromi Matsumae, Ayako Saito, Patrick E. Savage, Noriko Seguchi, Keiko Shimizu, Satoshi Terao, Yumi Yamaguchi-Kabata, Akira Yasukouchi, Minoru Yoneda, Katsushi Tokunaga

Research output: Contribution to journalArticle

7 Citations (Scopus)

Abstract

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.

Original languageEnglish
Article number33
JournalBMC Medical Ethics
Volume15
Issue number1
DOIs
Publication statusPublished - 2014 Apr 23
Externally publishedYes

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genetic research
Genetic Research
Medical Genetics
Japan
ethnicity
Education
Population
Research
dialogue
Social Sciences
Social Problems
Social Responsibility
social responsibility
Human Genome
North America
Ethics
prejudice
community
social science
Research Personnel

Keywords

  • Asian
  • Ethics
  • Ethnicity
  • Japanese
  • Labeling
  • Mongoloid
  • Population descriptors
  • Race

ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health(social science)
  • Health Policy

Cite this

Human genetic research, race, ethnicity and the labeling of populations : Recommendations based on an interdisciplinary workshop in Japan. / Takezawa, Yasuko; Kato, Kazuto; Oota, Hiroki; Caulfield, Timothy; Fujimoto, Akihiro; Honda, Shunwa; Kamatani, Naoyuki; Kawamura, Shoji; Kawashima, Kohei; Kimura, Ryosuke; Matsumae, Hiromi; Saito, Ayako; Savage, Patrick E.; Seguchi, Noriko; Shimizu, Keiko; Terao, Satoshi; Yamaguchi-Kabata, Yumi; Yasukouchi, Akira; Yoneda, Minoru; Tokunaga, Katsushi.

In: BMC Medical Ethics, Vol. 15, No. 1, 33, 23.04.2014.

Research output: Contribution to journalArticle

Takezawa, Y, Kato, K, Oota, H, Caulfield, T, Fujimoto, A, Honda, S, Kamatani, N, Kawamura, S, Kawashima, K, Kimura, R, Matsumae, H, Saito, A, Savage, PE, Seguchi, N, Shimizu, K, Terao, S, Yamaguchi-Kabata, Y, Yasukouchi, A, Yoneda, M & Tokunaga, K 2014, 'Human genetic research, race, ethnicity and the labeling of populations: Recommendations based on an interdisciplinary workshop in Japan', BMC Medical Ethics, vol. 15, no. 1, 33. https://doi.org/10.1186/1472-6939-15-33
Takezawa, Yasuko ; Kato, Kazuto ; Oota, Hiroki ; Caulfield, Timothy ; Fujimoto, Akihiro ; Honda, Shunwa ; Kamatani, Naoyuki ; Kawamura, Shoji ; Kawashima, Kohei ; Kimura, Ryosuke ; Matsumae, Hiromi ; Saito, Ayako ; Savage, Patrick E. ; Seguchi, Noriko ; Shimizu, Keiko ; Terao, Satoshi ; Yamaguchi-Kabata, Yumi ; Yasukouchi, Akira ; Yoneda, Minoru ; Tokunaga, Katsushi. / Human genetic research, race, ethnicity and the labeling of populations : Recommendations based on an interdisciplinary workshop in Japan. In: BMC Medical Ethics. 2014 ; Vol. 15, No. 1.
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abstract = "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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