Community engagement and informed consent in the international HapMap project

Community Genetics

Volumn 10, Issue 3, 2007, Pages 186-198

  Rotimi, Charles ^a   Leppert, Mark ^b   Matsuda, Ichiro ^e   Zeng, Changqing ^h   Zhang, Houcan ⁱ   Adebamowo, Clement ^j   Ajayi, Ike ^j   Aniagwu, Toyin ^j   Dixon, Missy ^b   Fukushima, Yoshimitsu ^f   Macer, Darryl ^k   Marshall, Patricia ^d   Nkwodimmah, Chibuzor ^j   Peiffer, Andy ^b   Royal, Charmaine ^a   Suda, Eiko ^g   Zhao, Hui ^h   Wang, Vivian Ota ^c   McEwen, Jean ^c  

^a HOWARD UNIVERSITY COLLEGE OF MEDICINE   (United States)

^b UNIVERSITY OF UTAH SCHOOL OF MEDICINE   (United States)

^c NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

^d CASE WESTERN RESERVE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^e HEALTH SCIENCES UNIVERSITY OF HOKKAIDO   (Japan)

^f SHINSHU UNIVERSITY SCHOOL OF MEDICINE   (Japan)

^g UNIVERSITY OF TSUKUBA   (Japan)

^h INSTITUTE OF GEOLOGY AND GEOPHYSICS   (China)

ⁱ BEIJING NORMAL UNIVERSITY   (China)

^j UNIVERSITY OF IBADAN   (Nigeria)

^k Regional Unit for Social and Human Sciences in Asia and the Pacific   (Thailand)

more..

Author keywords

Community consultation; Community engagement; Genetic variation research; Informed consent; International HapMap Project; Public consultation

Indexed keywords

ARTICLE; COMMUNITY; CONSULTATION; GENETIC LINKAGE; GENETIC VARIABILITY; HAPLOTYPE; HAPLOTYPE MAP; HUMAN; INFORMED CONSENT; MEDICAL RESEARCH; PERCEPTION; PRIORITY JOURNAL; PUBLIC OPINION;

ADULT; CHILD; CHROMOSOME MAPPING; FEMALE; GENETICS, POPULATION; HUMAN GENOME PROJECT; HUMANS; INFORMED CONSENT; INTERNATIONAL COOPERATION; MALE; PARENTS; VARIATION (GENETICS);

EID: 34250621473     PISSN: 14222795     EISSN: None     Source Type: Journal    
DOI: 10.1159/000101761     Document Type: Article

References (20)

1. International HapMap Consortium: A haplotype map of the human genome. Nature 2005;437:1299-1320.
2. International HapMap Consortium: The International HapMap Project. Nature 2003;426:789-796.
3. International HapMap Consortium: Integrating ethics and science in the International HapMap Project. Nat Rev Genet 2004;5:467-475.
4. Sharp RR, Foster MW: Involving study populations in the review of genetic research. J Law Med Ethics 2000;28:41-51, 3.
5. State of Utah Census 2000 Data Profile. www.business.utah.edu/bebr/ bebrCensus/State/State6.pdf.
6. Wikipedia: 'Yoruba'. http://en.wikipedia.org/wiki/Yoruba (accessed 18 October 2006).
7. CIA World Fact Book: 'China'. https://www.cia.gov/cia/publications/ factbook/geos/ch.html (accessed 18 October 2006).
8. Human Genome Organisation (HUGO): Statement on the principled conduct of genetics research. 1996. http://www.gene.ucl.ac.uk/hugo/conduct.htm.
9. Council for International Organizations of Medical Sciences (CIOMS): International ethical guidelines for biomedical research involving human subjects. 2002. http://www.cioms.ch/frame_guidelines_nov_2002.htm.
10. Deschenes M, Cardinal G, Knoppers BM, Laberge C; Quebec Network of Applied Genetic Medicine (RMGA): Statement of principles on the ethical conduct of human genetic research involving populations. Res Health 2003;30:1-4.
11. United Nations Educational, Scientific and Cultural Organization (UNESCO): Universal declaration on the human genome and human rights. J Med Philos 1998;23:334-341.
12. United Nations Educational, Scientific and Cultural Organization (UNESCO): International Declaration on Human Genetic Data. 2003. http://portal.unesco.org/en/ev.php@URL_ID=17720&URL_DO=DO_TOPIC& URL_SECTION=201.html.
13. Bankowski Z, Levine RJ (eds): Ethics and Research on Human Subjects: International Guidelines. Proceedings of the XXVIth CIOMS Conference. Geneva, CIOMS, 1993, p 63.
14. People's Republic of China, Ministry of Science and Technology and the Ministry of Public Health: Interim measures for the administration of human genetic resources. 1998. http://www.ebnic.org/interim.htm.
15. Human Genome Organisation (HUGO): Statement on DNA sampling: control and access. 1998. http://www.gene.ucl.ac.uk/hugo/sampling.html.
16. Japanese Ministry of Education, Culture, Sports, Science and Technology (MEXT), Council for Science and Technology, Bioethics Committee: Fundamental principles of research on the human genome. 2000. http://www.Mext.go.jp/a_menu/ shinkou/shisaku/principles.htm.
17. The Japanese Ministry of Education, Culture, Sports, Science and Technology, the Japanese Ministry of Health, Labour and Welfare, the Japanese Ministry of Economy, Trade and Industry: Ethical guidelines for analytical research on the human genome/genes. 2001. http://www.eubios.info/EGHGR.htm.
18. National Health Research Ethics Committee of Nigeria (NHGREC), Federal Ministry of Health, Department of Health Planning and Research: National Code of Health Research Ethics. 2006. http://www.nhrec.net/nhrec/code.html.
19. Secretariat of the Convention on Biological Diversity: Bonn Guidelines on Access to Genetic Resources and Fair and Equitable Sharing of the Benefits Arising out of their Utilization. Montreal: Secretariat of the Convention on Biological Diversity, 2002. http://www.biodiv.org/doc/publications/cbd-bonn- gdls-en.pdf.
20. Human Genome Organisation (HUGO): Statement on benefit sharing. Genome Digest 2000;6:7-9.