Integrating ethics and science in the International HapMap Project

Morris W. Foster; Ellen Wright Clayton; Bartha M. Knoppers; Renzong Qiu; Alastair Kent; Georgia M. Dunston; Kazuto Kato; Norio Niikawa; Isaac F. Adewole; Jessica Watkin; Houcan Zhang; Changqing Zeng; Ichiro Matsuda; Yoshimitsu Fukushima; Darryl R. Macer; Eiko Suda; Charles N. Rotimi; Clement A. Adebamowo; Toyin Aniagwu; Patricia A. Marshall; Olayemi Matthew; Chibuzor Nkwodimmah; Charmaine D.M. Royal; Mark F. Leppert; Missy Dixon; David L. Valle; Lynn B. Jorde; John W. Belmont; Aravinda Chakravarti; Mildred K. Cho; Troy Duster; Marla Jasperse; Pui Yan Kwok; Julio Licinio; Jeffrey C. Long; Pilar N. Ossorio; Vivian Ota Wang; Patricia Spallone; Sharon F. Terry; Richard A. Gibbs; Paul Hardenbol; Thomas D. Willis; Fuli Yu; David Altshuler; Stacey B. Gabriel; Huanming Yang; Lan Yang Ch'ang; Wei Huang; Bin Liu; Yan Shen; Paul Kwong Hang Tam; Lap Chee Tsui; Mary Miu Yee Waye; Jeffrey Tze Fei Wong; Qingrun Zhang; Mark S. Chee; Luana M. Galver; Semyon Kruglyak; Sarah S. Murray; Arnold R. Oliphant; Alexandre Montpetit; Thomas J. Hudson; Fanny Chagnon; Vincent Ferretti; Martin Leboeuf; Michael S. Phillips; Andrei Verner; Shenghui Duan; Denise L. Lind; Raymond D. Miller; John P. Rice; Nancy L. Saccone; Patricia Taillon-Miller; Ming Xiao; Yusuke Nakamura; Akihiro Sekine; Koki Sorimachi; Toshihiro Tanaka; Yoichi Tanaka; Tatsuhiko Tsunoda; Eiji Yoshino; David R. Bentley; Panos Deloukas; Don Powell; Mark J. Daly; Stephen F. Schaffner; Lincoln D. Stein; Fiona Cunningham; Ardavan Kanani; Gudmundur A. Thorisson; Peter E. Chen; David J. Cutler; Carl S. Kashuk; Shin Lin; Peter Donnelly; Jonathan Marchini; Gilean A.T. McVean; Simon R. Myers; Lon R. Cardon; Gonçalo R. Abecasis; Andrew Morris; Bruce S. Weir; James C. Mullikin; Stephen T. Sherry; Michael Feolo; Erica Sodergren; George M. Weinstock; Bruce W. Birren; Richard K. Wilson; Lucinda L. Fulton; Jane Rogers; Hua Han; Hongguang Wang; Martin Godbout; John C. Wallenburg; Paul L'Archevêque; Guy Bellemare; Kazuo Todani; Takashi Fujita; Satoshi Tanaka; Arthur L. Holden; Eric H. Lai; Francis S. Collins; Jean E. McEwen; Lisa D. Brooks; Mark S. Guyer; Elke Jordan; Jane L. Peterson; Jack Spiegel; Lawrence M. Sung; Lynn F. Zacharia; Karen Kennedy; Michael G. Dunn; Richard Seabrook; Mark Shillito; Barbara Skene; John G. Stewart; Eric S. Lander; Deborah A. Nickerson; Michael Boehnke; Julie A. Douglas; Richard R. Hudson; Leonid Kruglyak; Robert L. Nussbaum

doi:10.1038/nrg1351

Integrating ethics and science in the International HapMap Project

Morris W. Foster, Ellen Wright Clayton, Bartha M. Knoppers, Renzong Qiu, Alastair Kent, Georgia M. Dunston, Kazuto Kato, Norio Niikawa, Isaac F. Adewole, Jessica Watkin, Houcan Zhang, Changqing Zeng, Ichiro Matsuda, Yoshimitsu Fukushima, Darryl R. Macer, Eiko Suda, Charles N. Rotimi, Clement A. Adebamowo, Toyin Aniagwu, Patricia A. MarshallOlayemi Matthew, Chibuzor Nkwodimmah, Charmaine D.M. Royal, Mark F. Leppert, Missy Dixon, David L. Valle, Lynn B. Jorde, John W. Belmont, Aravinda Chakravarti, Mildred K. Cho, Troy Duster, Marla Jasperse, Pui Yan Kwok, Julio Licinio, Jeffrey C. Long, Pilar N. Ossorio, Vivian Ota Wang, Patricia Spallone, Sharon F. Terry, Richard A. Gibbs, Paul Hardenbol, Thomas D. Willis, Fuli Yu, David Altshuler, Stacey B. Gabriel, Huanming Yang, Lan Yang Ch'ang, Wei Huang, Bin Liu, Yan Shen, Paul Kwong Hang Tam, Lap Chee Tsui, Mary Miu Yee Waye, Jeffrey Tze Fei Wong, Qingrun Zhang, Mark S. Chee, Luana M. Galver, Semyon Kruglyak, Sarah S. Murray, Arnold R. Oliphant, Alexandre Montpetit, Thomas J. Hudson, Fanny Chagnon, Vincent Ferretti, Martin Leboeuf, Michael S. Phillips, Andrei Verner, Shenghui Duan, Denise L. Lind, Raymond D. Miller, John P. Rice, Nancy L. Saccone, Patricia Taillon-Miller, Ming Xiao, Yusuke Nakamura, Akihiro Sekine, Koki Sorimachi, Toshihiro Tanaka, Yoichi Tanaka, Tatsuhiko Tsunoda, Eiji Yoshino, David R. Bentley, Panos Deloukas, Don Powell, Mark J. Daly, Stephen F. Schaffner, Lincoln D. Stein, Fiona Cunningham, Ardavan Kanani, Gudmundur A. Thorisson, Peter E. Chen, David J. Cutler, Carl S. Kashuk, Shin Lin, Peter Donnelly, Jonathan Marchini, Gilean A.T. McVean, Simon R. Myers, Lon R. Cardon, Gonçalo R. Abecasis, Andrew Morris, Bruce S. Weir, James C. Mullikin, Stephen T. Sherry, Michael Feolo, Erica Sodergren, George M. Weinstock, Bruce W. Birren, Richard K. Wilson, Lucinda L. Fulton, Jane Rogers, Hua Han, Hongguang Wang, Martin Godbout, John C. Wallenburg, Paul L'Archevêque, Guy Bellemare, Kazuo Todani, Takashi Fujita, Satoshi Tanaka, Arthur L. Holden, Eric H. Lai, Francis S. Collins, Jean E. McEwen, Lisa D. Brooks, Mark S. Guyer, Elke Jordan, Jane L. Peterson, Jack Spiegel, Lawrence M. Sung, Lynn F. Zacharia, Karen Kennedy, Michael G. Dunn, Richard Seabrook, Mark Shillito, Barbara Skene, John G. Stewart, Eric S. Lander, Deborah A. Nickerson, Michael Boehnke, Julie A. Douglas, Richard R. Hudson, Leonid Kruglyak, Robert L. Nussbaum

Research output: Contribution to journal › Review article › peer-review

193 Scopus citations

Abstract

Genomics resources that use samples from identified populations raise scientific, social and ethical issues that are, in many ways, inextricably linked. Scientific decisions about which populations to sample to produce the HapMap, an international genetic vadation resource, have raised questions about the relationships between the social identities used to recruit participants and the biological findings of studies that will use the HapMap. The sometimes problematic implications of those complex relationships have led to questions about how to conduct genetic variation research that uses identified populations in an ethical way, including how to involve members of a population in evaluating the risks and benefits posed for everyone who shares that identity. The ways in which these issues are linked is increasingly drawing the scientific and ethical spheres of genomics research closer together.

Original language	English
Pages (from-to)	467-475
Number of pages	9
Journal	Nature Reviews Genetics
Volume	5
Issue number	6
DOIs	https://doi.org/10.1038/nrg1351
State	Published - Jun 1 2004

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10.1038/nrg1351

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Foster, M. W., Clayton, E. W., Knoppers, B. M., Qiu, R., Kent, A., Dunston, G. M., Kato, K., Niikawa, N., Adewole, I. F., Watkin, J., Zhang, H., Zeng, C., Matsuda, I., Fukushima, Y., Macer, D. R., Suda, E., Rotimi, C. N., Adebamowo, C. A., Aniagwu, T., ... Nussbaum, R. L. (2004). Integrating ethics and science in the International HapMap Project. Nature Reviews Genetics, 5(6), 467-475. https://doi.org/10.1038/nrg1351

Foster, Morris W. ; Clayton, Ellen Wright ; Knoppers, Bartha M. ; Qiu, Renzong ; Kent, Alastair ; Dunston, Georgia M. ; Kato, Kazuto ; Niikawa, Norio ; Adewole, Isaac F. ; Watkin, Jessica ; Zhang, Houcan ; Zeng, Changqing ; Matsuda, Ichiro ; Fukushima, Yoshimitsu ; Macer, Darryl R. ; Suda, Eiko ; Rotimi, Charles N. ; Adebamowo, Clement A. ; Aniagwu, Toyin ; Marshall, Patricia A. ; Matthew, Olayemi ; Nkwodimmah, Chibuzor ; Royal, Charmaine D.M. ; Leppert, Mark F. ; Dixon, Missy ; Valle, David L. ; Jorde, Lynn B. ; Belmont, John W. ; Chakravarti, Aravinda ; Cho, Mildred K. ; Duster, Troy ; Jasperse, Marla ; Kwok, Pui Yan ; Licinio, Julio ; Long, Jeffrey C. ; Ossorio, Pilar N. ; Wang, Vivian Ota ; Spallone, Patricia ; Terry, Sharon F. ; Gibbs, Richard A. ; Hardenbol, Paul ; Willis, Thomas D. ; Yu, Fuli ; Altshuler, David ; Gabriel, Stacey B. ; Yang, Huanming ; Ch'ang, Lan Yang ; Huang, Wei ; Liu, Bin ; Shen, Yan ; Tam, Paul Kwong Hang ; Tsui, Lap Chee ; Waye, Mary Miu Yee ; Wong, Jeffrey Tze Fei ; Zhang, Qingrun ; Chee, Mark S. ; Galver, Luana M. ; Kruglyak, Semyon ; Murray, Sarah S. ; Oliphant, Arnold R. ; Montpetit, Alexandre ; Hudson, Thomas J. ; Chagnon, Fanny ; Ferretti, Vincent ; Leboeuf, Martin ; Phillips, Michael S. ; Verner, Andrei ; Duan, Shenghui ; Lind, Denise L. ; Miller, Raymond D. ; Rice, John P. ; Saccone, Nancy L. ; Taillon-Miller, Patricia ; Xiao, Ming ; Nakamura, Yusuke ; Sekine, Akihiro ; Sorimachi, Koki ; Tanaka, Toshihiro ; Tanaka, Yoichi ; Tsunoda, Tatsuhiko ; Yoshino, Eiji ; Bentley, David R. ; Deloukas, Panos ; Powell, Don ; Daly, Mark J. ; Schaffner, Stephen F. ; Stein, Lincoln D. ; Cunningham, Fiona ; Kanani, Ardavan ; Thorisson, Gudmundur A. ; Chen, Peter E. ; Cutler, David J. ; Kashuk, Carl S. ; Lin, Shin ; Donnelly, Peter ; Marchini, Jonathan ; McVean, Gilean A.T. ; Myers, Simon R. ; Cardon, Lon R. ; Abecasis, Gonçalo R. ; Morris, Andrew ; Weir, Bruce S. ; Mullikin, James C. ; Sherry, Stephen T. ; Feolo, Michael ; Sodergren, Erica ; Weinstock, George M. ; Birren, Bruce W. ; Wilson, Richard K. ; Fulton, Lucinda L. ; Rogers, Jane ; Han, Hua ; Wang, Hongguang ; Godbout, Martin ; Wallenburg, John C. ; L'Archevêque, Paul ; Bellemare, Guy ; Todani, Kazuo ; Fujita, Takashi ; Tanaka, Satoshi ; Holden, Arthur L. ; Lai, Eric H. ; Collins, Francis S. ; McEwen, Jean E. ; Brooks, Lisa D. ; Guyer, Mark S. ; Jordan, Elke ; Peterson, Jane L. ; Spiegel, Jack ; Sung, Lawrence M. ; Zacharia, Lynn F. ; Kennedy, Karen ; Dunn, Michael G. ; Seabrook, Richard ; Shillito, Mark ; Skene, Barbara ; Stewart, John G. ; Lander, Eric S. ; Nickerson, Deborah A. ; Boehnke, Michael ; Douglas, Julie A. ; Hudson, Richard R. ; Kruglyak, Leonid ; Nussbaum, Robert L. / Integrating ethics and science in the International HapMap Project. In: Nature Reviews Genetics. 2004 ; Vol. 5, No. 6. pp. 467-475.

@article{e9add551f8ac4c0cb386a1e2a26fbc71,

title = "Integrating ethics and science in the International HapMap Project",

abstract = "Genomics resources that use samples from identified populations raise scientific, social and ethical issues that are, in many ways, inextricably linked. Scientific decisions about which populations to sample to produce the HapMap, an international genetic vadation resource, have raised questions about the relationships between the social identities used to recruit participants and the biological findings of studies that will use the HapMap. The sometimes problematic implications of those complex relationships have led to questions about how to conduct genetic variation research that uses identified populations in an ethical way, including how to involve members of a population in evaluating the risks and benefits posed for everyone who shares that identity. The ways in which these issues are linked is increasingly drawing the scientific and ethical spheres of genomics research closer together.",

author = "Foster, {Morris W.} and Clayton, {Ellen Wright} and Knoppers, {Bartha M.} and Renzong Qiu and Alastair Kent and Dunston, {Georgia M.} and Kazuto Kato and Norio Niikawa and Adewole, {Isaac F.} and Jessica Watkin and Houcan Zhang and Changqing Zeng and Ichiro Matsuda and Yoshimitsu Fukushima and Macer, {Darryl R.} and Eiko Suda and Rotimi, {Charles N.} and Adebamowo, {Clement A.} and Toyin Aniagwu and Marshall, {Patricia A.} and Olayemi Matthew and Chibuzor Nkwodimmah and Royal, {Charmaine D.M.} and Leppert, {Mark F.} and Missy Dixon and Valle, {David L.} and Jorde, {Lynn B.} and Belmont, {John W.} and Aravinda Chakravarti and Cho, {Mildred K.} and Troy Duster and Marla Jasperse and Kwok, {Pui Yan} and Julio Licinio and Long, {Jeffrey C.} and Ossorio, {Pilar N.} and Wang, {Vivian Ota} and Patricia Spallone and Terry, {Sharon F.} and Gibbs, {Richard A.} and Paul Hardenbol and Willis, {Thomas D.} and Fuli Yu and David Altshuler and Gabriel, {Stacey B.} and Huanming Yang and Ch'ang, {Lan Yang} and Wei Huang and Bin Liu and Yan Shen and Tam, {Paul Kwong Hang} and Tsui, {Lap Chee} and Waye, {Mary Miu Yee} and Wong, {Jeffrey Tze Fei} and Qingrun Zhang and Chee, {Mark S.} and Galver, {Luana M.} and Semyon Kruglyak and Murray, {Sarah S.} and Oliphant, {Arnold R.} and Alexandre Montpetit and Hudson, {Thomas J.} and Fanny Chagnon and Vincent Ferretti and Martin Leboeuf and Phillips, {Michael S.} and Andrei Verner and Shenghui Duan and Lind, {Denise L.} and Miller, {Raymond D.} and Rice, {John P.} and Saccone, {Nancy L.} and Patricia Taillon-Miller and Ming Xiao and Yusuke Nakamura and Akihiro Sekine and Koki Sorimachi and Toshihiro Tanaka and Yoichi Tanaka and Tatsuhiko Tsunoda and Eiji Yoshino and Bentley, {David R.} and Panos Deloukas and Don Powell and Daly, {Mark J.} and Schaffner, {Stephen F.} and Stein, {Lincoln D.} and Fiona Cunningham and Ardavan Kanani and Thorisson, {Gudmundur A.} and Chen, {Peter E.} and Cutler, {David J.} and Kashuk, {Carl S.} and Shin Lin and Peter Donnelly and Jonathan Marchini and McVean, {Gilean A.T.} and Myers, {Simon R.} and Cardon, {Lon R.} and Abecasis, {Gon{\c c}alo R.} and Andrew Morris and Weir, {Bruce S.} and Mullikin, {James C.} and Sherry, {Stephen T.} and Michael Feolo and Erica Sodergren and Weinstock, {George M.} and Birren, {Bruce W.} and Wilson, {Richard K.} and Fulton, {Lucinda L.} and Jane Rogers and Hua Han and Hongguang Wang and Martin Godbout and Wallenburg, {John C.} and Paul L'Archev{\^e}que and Guy Bellemare and Kazuo Todani and Takashi Fujita and Satoshi Tanaka and Holden, {Arthur L.} and Lai, {Eric H.} and Collins, {Francis S.} and McEwen, {Jean E.} and Brooks, {Lisa D.} and Guyer, {Mark S.} and Elke Jordan and Peterson, {Jane L.} and Jack Spiegel and Sung, {Lawrence M.} and Zacharia, {Lynn F.} and Karen Kennedy and Dunn, {Michael G.} and Richard Seabrook and Mark Shillito and Barbara Skene and Stewart, {John G.} and Lander, {Eric S.} and Nickerson, {Deborah A.} and Michael Boehnke and Douglas, {Julie A.} and Hudson, {Richard R.} and Leonid Kruglyak and Nussbaum, {Robert L.}",

note = "Funding Information: 42. Japanese Ministry of Education, Culture, Sports, Science and Technology (MEXT) Council for Science and Technology. Fundamental Principles of Research on the Human Genome [online], <http://www.mext.go.jp/a_menu/ shinkou/shisaku/principles.htm> (2000). Funding Information: The Populations/ELSI Group was given responsibility for two interrelated scientific and ethical questions: how to sample human genetic variation to identify common haplotypes, and whether to name the populations from which the donors came. Initially, Group members were from the United Kingdom, Canada and the United States — the initial countries that gave financial support to the Project. After Japan and China had secured financial support, both the Methods Group and the Populations/ELSI Group were succeeded by new groups with members from each participating country. Funding Information: Each genotyping centre has been assigned particular chromosomal regions to genotype in all four sets of samples. Researchers in three of the countries where samples were collected or where re-consent was obtained (that is, Japan, China and the United States) will benefit by participating in the genotyping. Also, the sample collection that took place in each country was supported by funding agencies in that country, except for Nigeria, where that work was funded by the NHGRI; although local investigators engaged the community and collected the samples, no local investigators will be involved in the genotyping. See BOX 4 for a discussion of why, given these circumstances, it was appropriate to collect samples in Nigeria. Funding Information: Chinese Academy of Sciences: Hua Han | Chinese Ministry of Science and Technology: Hongguang Wang | Genome Canada: Martin Godbout and John C. Wallenburg | G{\'e}nome Qu{\'e}bec: Paul L{\textquoteright}Archev{\^e}que and Guy Bellemare | Japanese Ministry of Education, Culture, Sports, Science and Technology: Kazuo Todani, Takashi Fujita and Satoshi Tanaka | The SNP Consortium: Arthur L. Holden and Eric H. Lai | US National Institutes of Health: Francis S. Collins, Jean E. McEwen,Vivian Ota Wang, Lisa D. Brooks, Mark S. Guyer, Elke Jordan, Jane L. Peterson, Jack Spiegel, Lawrence M. Sung and Lynn F. Zacharia | Wellcome Trust: Karen Kennedy, Michael G. Dunn, Richard Seabrook, Mark Shillito, Barbara Skene and John G. Stewart",

year = "2004",

month = jun,

day = "1",

doi = "10.1038/nrg1351",

language = "English",

volume = "5",

pages = "467--475",

journal = "Nature Reviews Genetics",

issn = "1471-0056",

number = "6",

}

Foster, MW, Clayton, EW, Knoppers, BM, Qiu, R, Kent, A, Dunston, GM, Kato, K, Niikawa, N, Adewole, IF, Watkin, J, Zhang, H, Zeng, C, Matsuda, I, Fukushima, Y, Macer, DR, Suda, E, Rotimi, CN, Adebamowo, CA, Aniagwu, T, Marshall, PA, Matthew, O, Nkwodimmah, C, Royal, CDM, Leppert, MF, Dixon, M, Valle, DL, Jorde, LB, Belmont, JW, Chakravarti, A, Cho, MK, Duster, T, Jasperse, M, Kwok, PY, Licinio, J, Long, JC, Ossorio, PN, Wang, VO, Spallone, P, Terry, SF, Gibbs, RA, Hardenbol, P, Willis, TD, Yu, F, Altshuler, D, Gabriel, SB, Yang, H, Ch'ang, LY, Huang, W, Liu, B, Shen, Y, Tam, PKH, Tsui, LC, Waye, MMY, Wong, JTF, Zhang, Q, Chee, MS, Galver, LM, Kruglyak, S, Murray, SS, Oliphant, AR, Montpetit, A, Hudson, TJ, Chagnon, F, Ferretti, V, Leboeuf, M, Phillips, MS, Verner, A, Duan, S, Lind, DL, Miller, RD, Rice, JP , Saccone, NL, Taillon-Miller, P, Xiao, M, Nakamura, Y, Sekine, A, Sorimachi, K, Tanaka, T, Tanaka, Y, Tsunoda, T, Yoshino, E, Bentley, DR, Deloukas, P, Powell, D, Daly, MJ, Schaffner, SF, Stein, LD, Cunningham, F, Kanani, A, Thorisson, GA, Chen, PE, Cutler, DJ, Kashuk, CS, Lin, S, Donnelly, P, Marchini, J, McVean, GAT, Myers, SR, Cardon, LR, Abecasis, GR, Morris, A, Weir, BS, Mullikin, JC, Sherry, ST, Feolo, M, Sodergren, E, Weinstock, GM, Birren, BW, Wilson, RK, Fulton, LL, Rogers, J, Han, H, Wang, H, Godbout, M, Wallenburg, JC, L'Archevêque, P, Bellemare, G, Todani, K, Fujita, T, Tanaka, S, Holden, AL, Lai, EH, Collins, FS, McEwen, JE, Brooks, LD, Guyer, MS, Jordan, E, Peterson, JL, Spiegel, J, Sung, LM, Zacharia, LF, Kennedy, K, Dunn, MG, Seabrook, R, Shillito, M, Skene, B, Stewart, JG, Lander, ES, Nickerson, DA, Boehnke, M, Douglas, JA, Hudson, RR, Kruglyak, L & Nussbaum, RL 2004, 'Integrating ethics and science in the International HapMap Project', Nature Reviews Genetics, vol. 5, no. 6, pp. 467-475. https://doi.org/10.1038/nrg1351

Integrating ethics and science in the International HapMap Project. / Foster, Morris W.; Clayton, Ellen Wright; Knoppers, Bartha M.; Qiu, Renzong; Kent, Alastair; Dunston, Georgia M.; Kato, Kazuto; Niikawa, Norio; Adewole, Isaac F.; Watkin, Jessica; Zhang, Houcan; Zeng, Changqing; Matsuda, Ichiro; Fukushima, Yoshimitsu; Macer, Darryl R.; Suda, Eiko; Rotimi, Charles N.; Adebamowo, Clement A.; Aniagwu, Toyin; Marshall, Patricia A.; Matthew, Olayemi; Nkwodimmah, Chibuzor; Royal, Charmaine D.M.; Leppert, Mark F.; Dixon, Missy; Valle, David L.; Jorde, Lynn B.; Belmont, John W.; Chakravarti, Aravinda; Cho, Mildred K.; Duster, Troy; Jasperse, Marla; Kwok, Pui Yan; Licinio, Julio; Long, Jeffrey C.; Ossorio, Pilar N.; Wang, Vivian Ota; Spallone, Patricia; Terry, Sharon F.; Gibbs, Richard A.; Hardenbol, Paul; Willis, Thomas D.; Yu, Fuli; Altshuler, David; Gabriel, Stacey B.; Yang, Huanming; Ch'ang, Lan Yang; Huang, Wei; Liu, Bin; Shen, Yan; Tam, Paul Kwong Hang; Tsui, Lap Chee; Waye, Mary Miu Yee; Wong, Jeffrey Tze Fei; Zhang, Qingrun; Chee, Mark S.; Galver, Luana M.; Kruglyak, Semyon; Murray, Sarah S.; Oliphant, Arnold R.; Montpetit, Alexandre; Hudson, Thomas J.; Chagnon, Fanny; Ferretti, Vincent; Leboeuf, Martin; Phillips, Michael S.; Verner, Andrei; Duan, Shenghui; Lind, Denise L.; Miller, Raymond D.; Rice, John P.; Saccone, Nancy L.; Taillon-Miller, Patricia; Xiao, Ming; Nakamura, Yusuke; Sekine, Akihiro; Sorimachi, Koki; Tanaka, Toshihiro; Tanaka, Yoichi; Tsunoda, Tatsuhiko; Yoshino, Eiji; Bentley, David R.; Deloukas, Panos; Powell, Don; Daly, Mark J.; Schaffner, Stephen F.; Stein, Lincoln D.; Cunningham, Fiona; Kanani, Ardavan; Thorisson, Gudmundur A.; Chen, Peter E.; Cutler, David J.; Kashuk, Carl S.; Lin, Shin; Donnelly, Peter; Marchini, Jonathan; McVean, Gilean A.T.; Myers, Simon R.; Cardon, Lon R.; Abecasis, Gonçalo R.; Morris, Andrew; Weir, Bruce S.; Mullikin, James C.; Sherry, Stephen T.; Feolo, Michael; Sodergren, Erica; Weinstock, George M.; Birren, Bruce W.; Wilson, Richard K.; Fulton, Lucinda L.; Rogers, Jane; Han, Hua; Wang, Hongguang; Godbout, Martin; Wallenburg, John C.; L'Archevêque, Paul; Bellemare, Guy; Todani, Kazuo; Fujita, Takashi; Tanaka, Satoshi; Holden, Arthur L.; Lai, Eric H.; Collins, Francis S.; McEwen, Jean E.; Brooks, Lisa D.; Guyer, Mark S.; Jordan, Elke; Peterson, Jane L.; Spiegel, Jack; Sung, Lawrence M.; Zacharia, Lynn F.; Kennedy, Karen; Dunn, Michael G.; Seabrook, Richard; Shillito, Mark; Skene, Barbara; Stewart, John G.; Lander, Eric S.; Nickerson, Deborah A.; Boehnke, Michael; Douglas, Julie A.; Hudson, Richard R.; Kruglyak, Leonid; Nussbaum, Robert L.

In: Nature Reviews Genetics, Vol. 5, No. 6, 01.06.2004, p. 467-475.

Research output: Contribution to journal › Review article › peer-review

TY - JOUR

T1 - Integrating ethics and science in the International HapMap Project

AU - Foster, Morris W.

AU - Clayton, Ellen Wright

AU - Knoppers, Bartha M.

AU - Qiu, Renzong

AU - Kent, Alastair

AU - Dunston, Georgia M.

AU - Kato, Kazuto

AU - Niikawa, Norio

AU - Adewole, Isaac F.

AU - Watkin, Jessica

AU - Zhang, Houcan

AU - Zeng, Changqing

AU - Matsuda, Ichiro

AU - Fukushima, Yoshimitsu

AU - Macer, Darryl R.

AU - Suda, Eiko

AU - Rotimi, Charles N.

AU - Adebamowo, Clement A.

AU - Aniagwu, Toyin

AU - Marshall, Patricia A.

AU - Matthew, Olayemi

AU - Nkwodimmah, Chibuzor

AU - Royal, Charmaine D.M.

AU - Leppert, Mark F.

AU - Dixon, Missy

AU - Valle, David L.

AU - Jorde, Lynn B.

AU - Belmont, John W.

AU - Chakravarti, Aravinda

AU - Cho, Mildred K.

AU - Duster, Troy

AU - Jasperse, Marla

AU - Kwok, Pui Yan

AU - Licinio, Julio

AU - Long, Jeffrey C.

AU - Ossorio, Pilar N.

AU - Wang, Vivian Ota

AU - Spallone, Patricia

AU - Terry, Sharon F.

AU - Gibbs, Richard A.

AU - Hardenbol, Paul

AU - Willis, Thomas D.

AU - Yu, Fuli

AU - Altshuler, David

AU - Gabriel, Stacey B.

AU - Yang, Huanming

AU - Ch'ang, Lan Yang

AU - Huang, Wei

AU - Liu, Bin

AU - Shen, Yan

AU - Tam, Paul Kwong Hang

AU - Tsui, Lap Chee

AU - Waye, Mary Miu Yee

AU - Wong, Jeffrey Tze Fei

AU - Zhang, Qingrun

AU - Chee, Mark S.

AU - Galver, Luana M.

AU - Kruglyak, Semyon

AU - Murray, Sarah S.

AU - Oliphant, Arnold R.

AU - Montpetit, Alexandre

AU - Hudson, Thomas J.

AU - Chagnon, Fanny

AU - Ferretti, Vincent

AU - Leboeuf, Martin

AU - Phillips, Michael S.

AU - Verner, Andrei

AU - Duan, Shenghui

AU - Lind, Denise L.

AU - Miller, Raymond D.

AU - Rice, John P.

AU - Saccone, Nancy L.

AU - Taillon-Miller, Patricia

AU - Xiao, Ming

AU - Nakamura, Yusuke

AU - Sekine, Akihiro

AU - Sorimachi, Koki

AU - Tanaka, Toshihiro

AU - Tanaka, Yoichi

AU - Tsunoda, Tatsuhiko

AU - Yoshino, Eiji

AU - Bentley, David R.

AU - Deloukas, Panos

AU - Powell, Don

AU - Daly, Mark J.

AU - Schaffner, Stephen F.

AU - Stein, Lincoln D.

AU - Cunningham, Fiona

AU - Kanani, Ardavan

AU - Thorisson, Gudmundur A.

AU - Chen, Peter E.

AU - Cutler, David J.

AU - Kashuk, Carl S.

AU - Lin, Shin

AU - Donnelly, Peter

AU - Marchini, Jonathan

AU - McVean, Gilean A.T.

AU - Myers, Simon R.

AU - Cardon, Lon R.

AU - Abecasis, Gonçalo R.

AU - Morris, Andrew

AU - Weir, Bruce S.

AU - Mullikin, James C.

AU - Sherry, Stephen T.

AU - Feolo, Michael

AU - Sodergren, Erica

AU - Weinstock, George M.

AU - Birren, Bruce W.

AU - Wilson, Richard K.

AU - Fulton, Lucinda L.

AU - Rogers, Jane

AU - Han, Hua

AU - Wang, Hongguang

AU - Godbout, Martin

AU - Wallenburg, John C.

AU - L'Archevêque, Paul

AU - Bellemare, Guy

AU - Todani, Kazuo

AU - Fujita, Takashi

AU - Tanaka, Satoshi

AU - Holden, Arthur L.

AU - Lai, Eric H.

AU - Collins, Francis S.

AU - McEwen, Jean E.

AU - Brooks, Lisa D.

AU - Guyer, Mark S.

AU - Jordan, Elke

AU - Peterson, Jane L.

AU - Spiegel, Jack

AU - Sung, Lawrence M.

AU - Zacharia, Lynn F.

AU - Kennedy, Karen

AU - Dunn, Michael G.

AU - Seabrook, Richard

AU - Shillito, Mark

AU - Skene, Barbara

AU - Stewart, John G.

AU - Lander, Eric S.

AU - Nickerson, Deborah A.

AU - Boehnke, Michael

AU - Douglas, Julie A.

AU - Hudson, Richard R.

AU - Kruglyak, Leonid

AU - Nussbaum, Robert L.

N1 - Funding Information: 42. Japanese Ministry of Education, Culture, Sports, Science and Technology (MEXT) Council for Science and Technology. Fundamental Principles of Research on the Human Genome [online], <http://www.mext.go.jp/a_menu/ shinkou/shisaku/principles.htm> (2000). Funding Information: The Populations/ELSI Group was given responsibility for two interrelated scientific and ethical questions: how to sample human genetic variation to identify common haplotypes, and whether to name the populations from which the donors came. Initially, Group members were from the United Kingdom, Canada and the United States — the initial countries that gave financial support to the Project. After Japan and China had secured financial support, both the Methods Group and the Populations/ELSI Group were succeeded by new groups with members from each participating country. Funding Information: Each genotyping centre has been assigned particular chromosomal regions to genotype in all four sets of samples. Researchers in three of the countries where samples were collected or where re-consent was obtained (that is, Japan, China and the United States) will benefit by participating in the genotyping. Also, the sample collection that took place in each country was supported by funding agencies in that country, except for Nigeria, where that work was funded by the NHGRI; although local investigators engaged the community and collected the samples, no local investigators will be involved in the genotyping. See BOX 4 for a discussion of why, given these circumstances, it was appropriate to collect samples in Nigeria. Funding Information: Chinese Academy of Sciences: Hua Han | Chinese Ministry of Science and Technology: Hongguang Wang | Genome Canada: Martin Godbout and John C. Wallenburg | Génome Québec: Paul L’Archevêque and Guy Bellemare | Japanese Ministry of Education, Culture, Sports, Science and Technology: Kazuo Todani, Takashi Fujita and Satoshi Tanaka | The SNP Consortium: Arthur L. Holden and Eric H. Lai | US National Institutes of Health: Francis S. Collins, Jean E. McEwen,Vivian Ota Wang, Lisa D. Brooks, Mark S. Guyer, Elke Jordan, Jane L. Peterson, Jack Spiegel, Lawrence M. Sung and Lynn F. Zacharia | Wellcome Trust: Karen Kennedy, Michael G. Dunn, Richard Seabrook, Mark Shillito, Barbara Skene and John G. Stewart

PY - 2004/6/1

Y1 - 2004/6/1

N2 - Genomics resources that use samples from identified populations raise scientific, social and ethical issues that are, in many ways, inextricably linked. Scientific decisions about which populations to sample to produce the HapMap, an international genetic vadation resource, have raised questions about the relationships between the social identities used to recruit participants and the biological findings of studies that will use the HapMap. The sometimes problematic implications of those complex relationships have led to questions about how to conduct genetic variation research that uses identified populations in an ethical way, including how to involve members of a population in evaluating the risks and benefits posed for everyone who shares that identity. The ways in which these issues are linked is increasingly drawing the scientific and ethical spheres of genomics research closer together.

AB - Genomics resources that use samples from identified populations raise scientific, social and ethical issues that are, in many ways, inextricably linked. Scientific decisions about which populations to sample to produce the HapMap, an international genetic vadation resource, have raised questions about the relationships between the social identities used to recruit participants and the biological findings of studies that will use the HapMap. The sometimes problematic implications of those complex relationships have led to questions about how to conduct genetic variation research that uses identified populations in an ethical way, including how to involve members of a population in evaluating the risks and benefits posed for everyone who shares that identity. The ways in which these issues are linked is increasingly drawing the scientific and ethical spheres of genomics research closer together.

UR - http://www.scopus.com/inward/record.url?scp=3142773390&partnerID=8YFLogxK

U2 - 10.1038/nrg1351

DO - 10.1038/nrg1351

M3 - Review article

C2 - 15153999

AN - SCOPUS:3142773390

VL - 5

SP - 467

EP - 475

JO - Nature Reviews Genetics

JF - Nature Reviews Genetics

SN - 1471-0056

IS - 6

ER -

Integrating ethics and science in the International HapMap Project

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