Ethical issues in human genomics research in developing countries
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Rosenberg NA, Huang L, Jewett EM, Szpiech ZA, Jankovic I, Boehnke M: Genome-wide association studies in diverse populations. Nat Rev Genet. 2010, 11 (5): 356-366. 10.1038/nrg2760.
Need AC, Goldstein DB: Next generation disparities in human genomics: concerns and remedies. Trends in Genetics. 2009, 25 (11): 489-494. 10.1016/j.tig.2009.09.012.
Berlinguer G: Bioethics, health and inequality. Lancet. 2004, 364: 1086-1091. 10.1016/S0140-6736(04)17066-9.
Resnik DB: The Distribution of Biomedical Research Resources and International Justice. Developing World Bioethics. 2004, 4 (1): 42-57. 10.1111/j.1471-8731.2004.00066.x.
Global Forum for Health Research: The 10/90 report on health research 2003-2004. 2004, Geneva: Global Forum for Health Research
Kaye J, Boddington P, de Vries J, Hawkins N, Melham K: Ethical implications of the use of whole genome methods in medical research. Eur J Hum Genet. 2010, 18 (4): 10.1038/ejhg.2009.191.
Caulfield T, McGuire AL, Cho MK, Buchanan JA, Burgess MM, Danilczyk U, Diaz CM, Fryer-Edwars K, Green SK, Hodosh MA: Research Ethics Recommendations for Whole-Genome Research: Consensus Statement. Plos Biology. 2008, 6 (3): e73-10.1371/journal.pbio.0060073.
McGuire AL, Caulfield T, Cho MK: Research ethics and the challenge of whole-genome sequencing. Nat Rev Genet. 2008, 9 (2): 152-156. 10.1038/nrg2302.
Mascalzoni D, Hicks A, Pramstaller P, Wjst M: Informed Consent in the Genomics Era. PLoS Medicine. 2008, 5 (9): e192-10.1371/journal.pmed.0050192.
Lunshof JE, Chadwick R, Vorhaus DB, Church GM: From genetic privacy to open consent. Nat Rev Genet. 2008, 9 (5): 406-411. 10.1038/nrg2360.
Heeney C, Hawkins N, De Vries J, Boddington P, Kaye J: Assessing the Privacy Risks of Data Sharing in Genomics. Public Health Genomics. 2010,
Malin B, Sweeney L: How (not) to protect genomic data privacy in a distributed network: using trail re-identification to evaluate and design anonymity protection systems. Journal of Biomedical Informatics. 2004, 37 (3): 179-192. 10.1016/j.jbi.2004.04.005.
Chokshi DA, Parker M, Kwiatkowski DP: Data Sharing and Intellectual Property in a Genomic Epidemiology Network: Policies for Large-Scale Research Collaboration. Bulletin of the World Health Organisation. 2006, 84 (5): 382-387. 10.2471/BLT.06.029843.
Parker M, Bull SJ, de Vries J, Agbenyega T, Doumbo OK, Kwiatkowski DP: Ethical Data Release in Genome-Wide Association Studies in Developing Countries. PLoS Med. 2009, 6 (11): e1000143-10.1371/journal.pmed.1000143.
The MalariaGEN Consortium: A global network for investigating the genomic epidemiology of malaria. Nature. 2008, 456 (7223): 732-737. 10.1038/nature07632.
Greenwood BM, Bojang K, Whitty CJM, Targett GAT: Malaria. the Lancet. 2005, 365: 1487-1498. 10.1016/S0140-6736(05)66420-3.
Kwiatkowski D: How Malaria has Affected the Human Genome and what Human Genetics can teach us about Malaria. American Journal of Human Genetics. 2005, 77: 171-190. 10.1086/432519.
Miller LH, Baruch DI, Marsh K, Doumbo OK: The pathogenic basis of malaria. Nature. 2002, 415 (6872): 673-679. 10.1038/415673a.
Snow RW, Guerra CA, Noor AM, Myint HY, Hay SI: The global distribution of clinical episodes of Plasmodium falciparum malaria. Nature. 2005, 434: 214-217. 10.1038/nature03342.
Nuffield Council on Bioethics: The ethics of research related to healthcare in developing countries. 2002, Nuffield Council on Bioethics
Emanuel EJ, Wendler D, Killen J, Grady C: What Makes Clinical Research in Developing Countries Ethical? The Benchmarks of Ethical Research. The Journal of Infectious Diseases. 2004, 189: 930-937. 10.1086/381709.
Lavery J, Grady C, Wahl ER, Emanuel E: Ethical Issues in International Biomedical Research. 2008, New York: Oxford University Press
Marsh V, Kamuya D, Rowa Y, Gikonyo C, Molyneux S: Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya. Social Science & Medicine. 2008
Lairumbi GM, Molyneux S, Snow RW, Marsh K, Peshu N, English M: Promoting the social value of research in Kenya: Examining the practical aspects of collaborative partnerships using an ethical framework. Social Science & Medicine. 2008, 67 (5): 734-747.
Diallo Dapa A, Doumbo Ogobara K, Plowe Christopher V, Wellems Thomas E, Emanuel Ezekiel J, Hurst Samia A: Community Permission for Medical Research in Developing Countries. Clinical Infectious Diseases. 2005, 41 (2): 255-259. 10.1086/430707.
Tindana PO, Singh JA, Tracy CS, Upshur REG, Daar AS, Singer PA, Frohlich J, Lavery JV: Grand Challenges in Global Health: Community Engagement in Research in Developing Countries. PLoS Med. 2007, 4 (9): e273-10.1371/journal.pmed.0040273.
Chokshi DA, Thera MA, Parker M, Diakite M, Makani J, Kwiatkowski DP, Doumbo OK: Valid Consent for Genomic Epidemiology in Developing Countries. PLoS Med. 2007, 4 (4): e95-10.1371/journal.pmed.0040095.
Daniels N: Just Health: Meeting Health Needs Fairly. 2008, New York: Cambridge University Press
Nyika A: Ethical and practical challenges surrounding genetic and genomic research in developing countries. Acta Tropica. 2009, 112 (Supplement 1): S21-S31. 10.1016/j.actatropica.2009.07.034.
Lowrance WW, Collins FS: Identifiability in Genomic Research. Science. 2007, 317 (5838): 600-602. 10.1126/science.1147699.
Marsh V, Kamuya D, Mlamba A, Williams T, Molyneux S: Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya. BMC Medical Ethics. 2010, 11 (1): 13-10.1186/1472-6939-11-13.
World Medical Association: Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. 2008, Sixth Revision
CIOMS: International Ethical Guidelines for Biomedical Research Involving Human Subjects. 2002, Geneva; Switzerland: World Health Organisation
Gikonyo C, Bejon P, Marsh V, Molyneux S: Taking social relationships seriously: Lessons learned from the informed consent practices of a vaccine trial on the Kenyan Coast. Social Science & Medicine. 2008, 67 (5): 708-720.
Fairhead J, Leach M, Small M: Where techno-science meets poverty: Medical research and the economy of blood in The Gambia, West Africa. Social Science & Medicine. 2006, 63 (4): 1109-1120.
Tindana PO, Kass N, Akweongo P: The Informed Consent Process in a Rural African Setting: A Case Study of the Kassena-Nankana District of Northern Ghana. IRB: Ethics and Human Research. 2006, 28 (3): 1-6.
Hill Z, Tawiah-Agyemang C, Odei-Danso S, Kirkwood B: Informed consent in Ghana: what do participants really understand?. J Med Ethics. 2008, 34 (1): 48-53. 10.1136/jme.2006.019059.
Molyneux CS, Peshu N, Marsh K: Understanding of informed consent in a low-income setting: three case studies from the Kenyan coast. Social Science & Medicine. 2004, 59 (12): 2547-2559.
Tekola F, Bull S, Farsides B, Newport M, Adeyemo A, Rotimi C, Davey G: Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study. BMC Medical Ethics. 2009, 10 (1): 13-10.1186/1472-6939-10-13.
Gitschier J: Inferential Genotyping of Y Chromosomes in Latter-Day Saints Founders and Comparison to Utah Samples in the HapMap Project. The American Journal of Human Genetics. 2009, 84 (2): 251-258. 10.1016/j.ajhg.2009.01.018.
Nyholt DR, Yu C-E, Visscher PM: On Jim Watson's APOE status: genetic information is hard to hide. Eur J Hum Genet. 2008, 17 (2): 147-149. 10.1038/ejhg.2008.198.
P3G Consortium, Church G, Heeney C, Hawkins N, de Vries J, Boddington P, Kaye J, Bobrow M, Weir B: Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection. PLoS Genet. 2009, 5 (10): e1000665-10.1371/journal.pgen.1000665.
Koenig BA, Soo-Jin Lee S, Richardson SS: Revisiting Race in a Genomic Age. 2008, New Brunswick, New Jersey and London: Rutgers University Press
Ellison GTH, Jones IR: Social identities and the 'new genetics': scientific and social consequences. Critical Public Health. 2002, 12 (3): 265-282. 10.1080/09581590210153362.
Andanda PA: Human-tissue-related inventions: ownership and intellectual property rights in international collaborative research in developing countries. J Med Ethics. 2008, 34 (3): 171-179. 10.1136/jme.2006.019612.
Upshur R, Lavery J, Tindana P: Taking tissue seriously means taking communities seriously. BMC Medical Ethics. 2007, 8 (1): 11-10.1186/1472-6939-8-11.
Muula AS, Mfutso-Bengo JM: Responsibilities and obligations of using human research specimens transported across national boundaries. J Med Ethics. 2007, 33 (1): 35-38. 10.1136/jme.2005.012492.
Langat SK: Reuse Of Samples: Ethical Issues Encountered By Two Institutional Ethics Review Committees In Kenya. Bioethics. 2005, 19 (5-6): 537-549. 10.1111/j.1467-8519.2005.00463.x.
Pálsson Gs, Rabinow P: The Icelandic genome debate. 2001, 19 (5): 166-171.
Reardon J: Race to the Finish. Identity and Governance in an Age of Genomics. 2005, Princeton and Oxford: Princeton University Press
O'Meara WP, Bejon P, Mwangi TW, Okiro EA, Peshu N, Snow RW, Newton CRJC, Marsh K: Effect of a fall in malaria transmission on morbidity and mortality in Kilifi, Kenya. The Lancet. 2008, 372 (9649): 1555-1562.
Byass P: Making sense of long-term changes in malaria. The Lancet. 2008, 372 (9649): 1523-1525. 10.1016/S0140-6736(08)61631-1.
Wendler D, Pace C, Talisuna AO, Maiso F, Grady C, Emanuel E: Research on Stored Biological Samples: The Views of Ugandans. IRB: Ethics and Human Research. 2005, 27 (2): 1-5. 10.2307/3564479.
Glasziou P, Chalmers I: Ethics review roulette: what can we learn?. BMJ. 2004, 328 (7432): 121-122. 10.1136/bmj.328.7432.121.
Hoedemaekers R, Gordijn B, Hekster Y, Van Agt F: The complexities of ethical evaluation of genomics research. HEC Forum. 2006, 18 (1): 18-36. 10.1007/s10730-006-7985-6.
Cardon LR, Bell JI: Association study designs for complex diseases. Nat Rev Genet. 2001, 2 (2): 91-99. 10.1038/35052543.
Donnelly P: Progress and challenges in genome-wide association studies in humans. Nature. 2008, 456 (7223): 728-731. 10.1038/nature07631.
Kaye J, Heeney C, Hawkins N, de Vries J, Boddington P: Data sharing in genomics: re-shaping scientific practice. Nat Rev Genet. 2009, 10: 331-335. 10.1038/nrg2573.
Kass N, Dawson L, Loyo-Berrios NI: Ethical Oversight of Research in Developing Countries. IRB: Ethics and Human Research. 2003, 25 (2): 1-10. 10.2307/3563634.
Kass NE, Hyder AA, Ajuwon A, Appiah-Poku J, Barsdorf N, Elsayed DE, Mokhachane M, Mupenda B, Ndebele P, Ndossi G: The Structure and Function of Research Ethics Committees in Africa: A Case Study. PLoS Medicine. 2007, 4 (1): e3-10.1371/journal.pmed.0040003.
Nyika A, Kilama W, Chilengi R, Tangwa G, Tindana P, Ndebele P, Ikingura J: Composition, training needs and independence of ethics review committees across Africa: are the gate-keepers rising to the emerging challenges?. J Med Ethics. 2009, 35 (3): 189-193. 10.1136/jme.2008.025189.
Foster MW, Sharp RR: Share and share alike: deciding how to distribute the scientific and social benefits of genomic data. Nat Rev Genet. 2007, 8 (8): 633-639. 10.1038/nrg2124.