-
1
-
-
0035861017
-
Informed consent for population-based research involving genetics
-
BESKOW, L. M., BURKE, W., MERZ, J. F., BARR, P. A., TERRY, S., PENCHASZADEH, V. B. ET AL. (2001). Informed consent for population-based research involving genetics. Journal of the American Medical Association, 286(18), 2315-2321. (Pubitemid 33063154)
-
(2001)
Journal of the American Medical Association
, vol.286
, Issue.18
, pp. 2315-2321
-
-
Beskow, L.M.1
Burke, W.2
Merz, J.F.3
Barr, P.A.4
Terry, S.5
Penchaszadeh, V.B.6
Gostin, L.O.7
Gwinn, M.8
Khoury, M.J.9
-
2
-
-
0015012388
-
Community advisory boards and maximum feasible participation
-
BRIELAND, D. (1971). Community advisory boards and maximum feasible participation. American Journal of Public Health, 61(2), 292-296.
-
(1971)
American Journal of Public Health
, vol.61
, Issue.2
, pp. 292-296
-
-
Brieland, D.1
-
3
-
-
33845354052
-
Trends in ethical and legal frameworks for the use of human biobanks
-
DOI 10.1183/09031936.00165006
-
CAMBON-THOMSEN, A., RIAL-SEBBAG, E., & KNOPPERS, B. M. (2007). Trends in ethical and legal frameworks for the use of human biobanks. European Respiratory Journal, 30(2), 373-382. (Pubitemid 47194191)
-
(2007)
European Respiratory Journal
, vol.30
, Issue.2
, pp. 373-382
-
-
Cambon-Thomsen, A.1
Rial-Sebbag, E.2
Knoppers, B.M.3
-
5
-
-
0032200768
-
Community advisory boards: Their Role in AIDS Clinical Trials
-
COX, L. E., ROUFF, J. R., SVENDSEN, K. H., MARKOWITZ, M., & ABRAMS, D. I. (1998). Community advisory boards: Their role in AIDS clinical trials. Health and Social Work, 23(4), 290-297. (Pubitemid 128457794)
-
(1998)
Health and Social Work
, vol.23
, Issue.4
, pp. 290-297
-
-
Cox, L.E.1
Rouff, J.R.2
Svendsen, K.H.3
Markowitz, M.4
Abrams, D.I.5
-
6
-
-
67650024627
-
-
Washington, DC: Sponsored by National Institute of Allergy and Infectious Diseases NIAID, Division of AIDS DAIDS. Retrieved from
-
Cross-Cab Working Group. (2005). Defining best practices for community representation involvement in HIV clinical research networks. Washington, DC: Sponsored by National Institute of Allergy and Infectious Diseases (NIAID), Division of AIDS (DAIDS). Retrieved from http://www.hptn.org/web%20documents/ CommunityProgram/Cross-CabMeeting/DBPforCommunityMay6-82005Report.pdf.
-
(2005)
Defining Best Practices for Community Representation Involvement in HIV Clinical Research Networks
-
-
-
7
-
-
84938098458
-
-
Eds., Surrey, UK: Ashgate
-
ELGER, B., BILLER-ANDORNO, N., MAURON, A., & CAPRON, A. (Eds.). (2008). Ethical issues in governing biobanks: Global perspectives. Surrey, UK: Ashgate.
-
(2008)
Ethical Issues in Governing Biobanks: Global Perspectives
-
-
Elger, B.1
Biller-Andorno, N.2
Mauron, A.3
Capron, A.4
-
8
-
-
33745596413
-
Consent and anonymization in research involving biobanks: Differing terms and norms present serious barriers to an international framework
-
DOI 10.1038/sj.embor.7400740, PII 7400740
-
ELGER, B. S. & CAPLAN, A. L. (2006). Consent and anonymization in research involving biobanks: Differing terms and norms present serious barriers to an international framework. EMBO Reports, 7(7), 661-666. (Pubitemid 43986258)
-
(2006)
EMBO Reports
, vol.7
, Issue.7
, pp. 661-666
-
-
Elger, B.S.1
Caplan, A.L.2
-
9
-
-
84857895586
-
Informing the debate: Stored blood spots
-
Retrieved July 20, 2011 from
-
FLECK, L. M., MONGOVEN, A., & MARZEC, S. (2008). Informing the debate: Stored blood spots. Institute for Public Policy and Social Research: Michigan State University. Retrieved July 20, 2011 from http://www.ippsr.msu. edu/Publications/HPFleck.pdf.
-
(2008)
Institute for Public Policy and Social Research: Michigan State University
-
-
Fleck, L.M.1
Mongoven, A.2
Marzec, S.3
-
10
-
-
80052605655
-
-
FLEMING, J. M. (2007). Biobanks: Professional, donor and public perceptions of tissue banks and the ethical and legal challenges of consent, linkage and the disclosure of research results (Doctoral dissertation, Institute for Molecular Science, University of Queensland, Brisbane, Australia).
-
(2007)
Biobanks: Professional, Donor and Public Perceptions of Tissue Banks and the Ethical and Legal Challenges of Consent, Linkage and the Disclosure of Research Results (Doctoral Dissertation, Institute for Molecular Science, University of Queensland, Brisbane, Australia)
-
-
Fleming, J.M.1
-
11
-
-
79956066390
-
Patient perspectives on group benefits and harms in genetic research
-
GOLDENBERG, A. J., HULL, S. C., WILFOND, B. S., & SHARP, R. R. (2011). Patient perspectives on group benefits and harms in genetic research. Public Health Genomics, 14(3), 135-142.
-
(2011)
Public Health Genomics
, vol.14
, Issue.3
, pp. 135-142
-
-
Goldenberg, A.J.1
Hull, S.C.2
Wilfond, B.S.3
Sharp, R.R.4
-
12
-
-
77951641631
-
Research ethics: An investigation of patients' motivations for their participation in genetics-related research
-
HALLOWELL, N., COOKE, S., CRAWFORD, G., LUCASSEN, A., PARKER, M., & SNOWDON, C. (2010). Research ethics: An investigation of patients' motivations for their participation in genetics-related research. Journal of Medical Ethics, 36(1), 37-45.
-
(2010)
Journal of Medical Ethics
, vol.36
, Issue.1
, pp. 37-45
-
-
Hallowell, N.1
Cooke, S.2
Crawford, G.3
Lucassen, A.4
Parker, M.5
Snowdon, C.6
-
13
-
-
34548297542
-
Community engagement: Participation on whose terms?
-
HEAD, B. W. (2007). Community engagement: Participation on whose terms? Australian Journal of Political Science, 42(3), 441-454.
-
(2007)
Australian Journal of Political Science
, vol.42
, Issue.3
, pp. 441-454
-
-
Head, B.W.1
-
14
-
-
78650312582
-
Researcher practices on returning genetic research results
-
HEANEY, C., TINDALL, G., LUCAS, J., & HAGA, S. B. (2010). Researcher practices on returning genetic research results. Genetic Testing and Molecular Biomarkers, 14(6), 821-827.
-
(2010)
Genetic Testing and Molecular Biomarkers
, vol.14
, Issue.6
, pp. 821-827
-
-
Heaney, C.1
Tindall, G.2
Lucas, J.3
Haga, S.B.4
-
15
-
-
77956341799
-
Donors perceptions of consent to and feedback from biobank research: Time to acknowledge diversity?
-
HOEYER, K. (2010). Donors perceptions of consent to and feedback from biobank research: Time to acknowledge diversity? Public Health Genomics, 13(6), 345-352.
-
(2010)
Public Health Genomics
, vol.13
, Issue.6
, pp. 345-352
-
-
Hoeyer, K.1
-
16
-
-
71849090072
-
Public opinion about the importance of privacy in biobank research
-
KAUFMAN, D. J., MURPHY-BOLLINGER, J., SCOTT, J., & HUDSON, K. L. (2009). Public opinion about the importance of privacy in biobank research. American Journal of Human Genetics, 85(5), 643-654.
-
(2009)
American Journal of Human Genetics
, vol.85
, Issue.5
, pp. 643-654
-
-
Kaufman, D.J.1
Murphy-Bollinger, J.2
Scott, J.3
Hudson, K.L.4
-
17
-
-
40149099045
-
Offering results to research subjects: U. S. institutional review board policy
-
KOZANCZYN, C., COLLINS, K., & FERNANDEZ, C. V. (2007). Offering results to research subjects: U. S. institutional review board policy. Accountability in Research, 14(4), 255-267.
-
(2007)
Accountability in Research
, vol.14
, Issue.4
, pp. 255-267
-
-
Kozanczyn, C.1
Collins, K.2
Fernandez, C.V.3
-
19
-
-
0347275939
-
Broadening participation in community problem solving: A multidisciplinary model to support collaborative practice and research
-
DOI 10.1093/jurban/jtg014
-
LASKER, R. D. & WEISS, E. S. (2003). Broadening participation in community problem solving: A multidisciplinary model to support collaborative practice and research. Journal of Urban Health, 80(1), 14-60. (Pubitemid 37486153)
-
(2003)
Journal of Urban Health
, vol.80
, Issue.1
, pp. 14-60
-
-
Lasker, R.D.1
Weiss, E.S.2
Baker, Q.E.3
Collier, A.K.4
Israel, B.A.5
Plough, A.6
Bruner, C.7
-
20
-
-
77955660006
-
Public and biobank participant attitudes toward genetic research participation and data sharing
-
LEMKE, A. A., WOLF, W. A., HEBERT-BEIRNE, J., & SMITH, M. E. (2010). Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics, 13(6), 368-377.
-
(2010)
Public Health Genomics
, vol.13
, Issue.6
, pp. 368-377
-
-
Lemke, A.A.1
Wolf, W.A.2
Hebert-Beirne, J.3
Smith, M.E.4
-
21
-
-
0141675032
-
Public consultation in bioethics. What's the point of asking the public when they have neither scientific nor ethical expertise?
-
DOI 10.1023/A:1025381828650
-
LEVITT, M. (2003). Public consultation in bioethics: What's the point of consulting the public when they have neither scientific nor ethical expertise? Health Care Analysis, 11(1), 15-25. (Pubitemid 37129583)
-
(2003)
Health Care Analysis
, vol.11
, Issue.1
, pp. 15-25
-
-
Levitt, M.1
-
22
-
-
77954826175
-
In the public interest: Assessing expert and stakeholder influence in public deliberation about biobanks
-
MACLEAN, S. & BURGESS, M. M. (2010). In the public interest: Assessing expert and stakeholder influence in public deliberation about biobanks. Public Understanding of Science, 19(4), 486-496.
-
(2010)
Public Understanding of Science
, vol.19
, Issue.4
, pp. 486-496
-
-
Maclean, S.1
Burgess, M.M.2
-
23
-
-
0035198203
-
What is community? An evidence-based definition for participatory public health
-
MACQUEEN, K. M., MCLELLAN, E., METZGER, D. S., KEGELES, S., STRAUSS, R. P., SCOTTI, R. ET AL. (2001). What is community? An evidence-based definition for participatory public health. American Journal of Public Health, 91(12), 1929-1938. (Pubitemid 33111636)
-
(2001)
American Journal of Public Health
, vol.91
, Issue.12
, pp. 1929-1938
-
-
MacQueen, K.M.1
McLellan, E.2
Metzger, D.S.3
Kegeles, S.4
Strauss, R.P.5
Scotti, R.6
Blanchard, L.7
Trotter II, R.T.8
-
24
-
-
79960274770
-
Biobanks: DNA and research
-
M. Crowley Ed. Garrison, NY: The Hastings Center
-
MASCHKE, K. J. (2008). Biobanks: DNA and research. In M. Crowley (Ed.), From birth to death and bench to clinic: The Hastings Center bioethics briefing book for journalists, policymakers, and campaigns (pp. 11-14). Garrison, NY: The Hastings Center.
-
(2008)
From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns
, pp. 11-14
-
-
Maschke, K.J.1
-
25
-
-
84857905955
-
-
Retrieved January 10, 2011 from
-
Mayo Foundation for Medical Education and Research. (2011). Mayo Clinic Biobank: Governing the biobank. Retrieved January 10, 2011 from http://mayoresearch.mayo.edu/biobank/biobank-governing.cfm.
-
(2011)
Mayo Clinic Biobank: Governing the Biobank
-
-
-
26
-
-
57149115791
-
Community consultation and communication for a population-based DNA biobank: The marshfield clinic personalized medicine research project
-
DOI 10.1002/ajmg.a.32559
-
MCCARTY, C. A., CHAPMAN-STONE, D., DERFUS, T., GIAMPIETRO, P. F., & FOST, N. (2008). Community consultation and communication for a population-based DNA biobank: The Marshfield Clinic personalized medicine research project. American Journal of Medical Genetics, Part A, 146 A (23), 3026-3033. (Pubitemid 352774642)
-
(2008)
American Journal of Medical Genetics, Part A
, vol.146
, Issue.23
, pp. 3026-3033
-
-
McCarty, C.A.1
Chapman-Stone, D.2
Derfus, T.3
Giampietro, P.F.4
Fost, N.5
Berger, T.6
Boehning, P.7
Bredl, S.8
Brubaker, M.9
Frey, M.10
Gardner, J.11
Hein, P.12
Kaster, N.13
Kelly, C.14
Kobs, M.15
Kommer, N.16
Krake, D.17
Krueger, M.18
Levelius, J.19
Minor, J.20
Paul, M.21
Schneider, M.22
Schultz, S.23
Schwanebeck, J.24
more..
-
27
-
-
84896185276
-
-
Northampton, MA: Edward Elgar Publishing
-
MCKELVEY, M. D., RICKNE, A., & LAAGE-HELLMAN, J. (2004). The economic dynamics of modern biotechnology. Northampton, MA: Edward Elgar Publishing.
-
(2004)
The Economic Dynamics of Modern Biotechnology
-
-
McKelvey, M.D.1
Rickne, A.2
Laage-Hellman, J.3
-
28
-
-
77956628518
-
Researcher perspectives on disclosure of incidental findings in genetic research
-
MEACHAM, M. C., STARKS, H., BURKE, W., & EDWARDS, K. (2010). Researcher perspectives on disclosure of incidental findings in genetic research. Journal of Empirical Research on Human Research Ethics, 5(3), 31-41.
-
(2010)
Journal of Empirical Research on Human Research Ethics
, vol.5
, Issue.3
, pp. 31-41
-
-
Meacham, M.C.1
Starks, H.2
Burke, W.3
Edwards, K.4
-
29
-
-
0024051319
-
Community consultation in socially sensitive research: Lessons from clinical trials of treatments for AIDS
-
MELTON, G. B., LEVINE, R. J., KOOCHER, G. P., ROSENTHAL, R., & THOMPSON, W. C. (1988). Community consultation in socially sensitive research: Lessons from clinical trials of treatments for AIDS. American Psychologist, 43(7), 573-581.
-
(1988)
American Psychologist
, vol.43
, Issue.7
, pp. 573-581
-
-
Melton, G.B.1
Levine, R.J.2
Koocher, G.P.3
Rosenthal, R.4
Thompson, W.C.5
-
30
-
-
84857908574
-
-
Retrieved January 10, 2011 from
-
Michigan Department of Community Health (MDCH). Michigan BioTrust for health-Advisory boards (2001-2011). Retrieved January 10, 2011 from http://www.michigan. gov/mdch/0, 1607, 7-132-2942-4911-4916-244424-, 00.html.
-
Michigan BioTrust for Health-advisory Boards (2001-2011)
-
-
-
31
-
-
72249092345
-
Public perspectives on informed consent for biobanking
-
MURPHY, J., SCOTT, J., KAUFMAN, D., GELLER, G., LEROY, L., & HUDSON, K. (2009). Public perspectives on informed consent for biobanking. American Journal of Public Health, 99(12), 2128-2134.
-
(2009)
American Journal of Public Health
, vol.99
, Issue.12
, pp. 2128-2134
-
-
Murphy, J.1
Scott, J.2
Kaufman, D.3
Geller, G.4
Leroy, L.5
Hudson, K.6
-
33
-
-
67449097690
-
Engaging the public on biobanks: Outcomes of the BC biobank deliberation
-
O'DOHERTY, K. C. & BURGESS, M. M. (2009). Engaging the public on biobanks: Outcomes of the BC biobank deliberation. Public Health Genomics, 12(4), 203-215.
-
(2009)
Public Health Genomics
, vol.12
, Issue.4
, pp. 203-215
-
-
O'Doherty, K.C.1
Burgess, M.M.2
-
34
-
-
77951473507
-
Structuring public engagement for effective input in policy development on human tissue biobanking
-
O'DOHERTY, K. C. & HAWKINS, A. (2010). Structuring public engagement for effective input in policy development on human tissue biobanking. Public Health Genomics, 13(4), 197-206.
-
(2010)
Public Health Genomics
, vol.13
, Issue.4
, pp. 197-206
-
-
O'Doherty, K.C.1
Hawkins, A.2
-
35
-
-
2542444547
-
Protecting human subjects: The role of community advisory boards
-
QUINN, S. C. (2004). Ethics in public health research: Protecting human subjects-The role of community advisory boards. American Journal of Public Health, 94(6), 918-922. (Pubitemid 38691533)
-
(2004)
American Journal of Public Health
, vol.94
, Issue.6
, pp. 918-922
-
-
Quinn, S.C.1
-
36
-
-
0027637179
-
The institutional review board as a mirror of scientific and ethical standards
-
ROSNOW, R. L., ROTHERAM-BORUS, M. J., CECI, S. J., BLANCK, P. D., & KOOCHER, G. P. (1993). The institutional review board as a mirror of scientific and ethical standards. American Psychologist, 48(7), 821-826.
-
(1993)
American Psychologist
, vol.48
, Issue.7
, pp. 821-826
-
-
Rosnow, R.L.1
Rotheram-Borus, M.J.2
Ceci, S.J.3
Blanck, P.D.4
Koocher, G.P.5
-
37
-
-
22944436146
-
Biobanks and bioethics: The politics of legitimation
-
DOI 10.1080/13501760500160623
-
SALTER, B. & JONES, M. (2005). Biobanks and bioethics: The politics of legitimation. Journal of European Public Policy, 12(4), 710-732. (Pubitemid 41053338)
-
(2005)
Journal of European Public Policy
, vol.12
, Issue.4
, pp. 710-732
-
-
Salter, B.1
Jones, D.M.2
-
38
-
-
67650077579
-
Challenges of establishing a community advisory board (CAB) in a low-income, low-resource setting: Experiences from Bagamoyo, Tanzania
-
SHUBIS, K., JUMA, O., SHARIFU, R., BURGESS, B., & ABDULLA, S. (2009). Challenges of establishing a community advisory board (CAB) in a low-income, low-resource setting: Experiences from Bagamoyo, Tanzania. Health Research Policy and Systems, 7(1), 16.
-
(2009)
Health Research Policy and Systems
, vol.7
, Issue.1
, pp. 16
-
-
Shubis, K.1
Juma, O.2
Sharifu, R.3
Burgess, B.4
Abdulla, S.5
-
39
-
-
80052573480
-
Active choice, but not too active: Public perspectives on biobank consent models
-
ahead of print, DOI:10.1097/GIM.0b013e31821d2f88
-
SIMON, C. M., L'HEUREUX, J., MURRAY, J. C., WINOKUR, P., WEINER, G., & NEWBURY, E., SHINKUNAS, L., & ZIMMERMAN, B. (2011). Active choice, but not too active: Public perspectives on biobank consent models. Genetics in Medicine [ahead of print]. DOI:10.1097/GIM.0b013e31821d2f88.
-
(2011)
Genetics in Medicine
-
-
Simon, C.M.1
L'Heureux, J.2
Murray, J.C.3
Winokur, P.4
Weiner, G.5
Newbury, E.6
Shinkunas, L.7
Zimmerman, B.8
-
40
-
-
85035320097
-
Biobanking: Social, political and ethical aspects
-
John Wiley & Sons, Ltd
-
TUTTON, R. (2010). Biobanking: Social, political and ethical aspects. In Encyclopedia of Life Sciences. John Wiley & Sons, Ltd.
-
(2010)
Encyclopedia of Life Sciences
-
-
Tutton, R.1
-
41
-
-
77950804831
-
International efforts to develop biospecimen best practices
-
VAUGHT, J. B., CABOUX, E., & HAINAUT, P. (2010). International efforts to develop biospecimen best practices. Cancer Epidemiology, Biomarkers & Prevention, 19(4), 912-915.
-
(2010)
Cancer Epidemiology, Biomarkers & Prevention
, vol.19
, Issue.4
, pp. 912-915
-
-
Vaught, J.B.1
Caboux, E.2
Hainaut, P.3
-
42
-
-
71549118829
-
Evolutionary concepts in biobanking: The BC BioLibrary
-
WATSON, P. H., WILSON-MCMANUS, J. E., BARNES, R. O., GIESZ, S. C., PNG, A., HEGELE, R. G. ET AL. (2009). Evolutionary concepts in biobanking: The BC BioLibrary. Journal of Translational Medicine, 7(1), 95.
-
(2009)
Journal of Translational Medicine
, vol.7
, Issue.1
, pp. 95
-
-
Watson, P.H.1
Wilson-McManus, J.E.2
Barnes, R.O.3
Giesz, S.C.4
Png, A.5
Hegele, R.G.6
Et, A.L.7
-
43
-
-
32644450117
-
Community-based participatory research in practice-based research networks
-
DOI 10.1370/afm.511
-
WESTFALL, J. M., VANVORST, R. F., MAIN, D. S., & HERBERT, C. (2006). Community-based participatory research in practicebased research networks. Annals of Family Medicine, 4(1), 8-14. (Pubitemid 43243907)
-
(2006)
Annals of Family Medicine
, vol.4
, Issue.1
, pp. 8-14
-
-
Westfall, J.M.1
VanVorst, R.F.2
Main, D.S.3
Herbert, C.4
-
44
-
-
0141679157
-
The charitable trust as a model for genomic biobanks
-
DOI 10.1056/NEJMsb030036
-
WINICKOFF, D. E. & WINICKOFF, R. N. (2003). The charitable trust as a model for genomic biobanks. New England Journal of Medicine, 349(12), 1180-1184. (Pubitemid 37122332)
-
(2003)
New England Journal of Medicine
, vol.349
, Issue.12
, pp. 1180-1184
-
-
Winickoff, D.E.1
Winickoff, R.N.2
-
45
-
-
70349523756
-
IRB chairs' perspectives on genomics research involving stored biological materials: Ethical concerns and proposed solutions
-
WOLF, L. E., CATANIA, J. A., DOLCINI, M. M., POLLACK, L. M., & LO, B. (2008). IRB chairs' perspectives on genomics research involving stored biological materials: Ethical concerns and proposed solutions. Journal of Empirical Research on Human Research Ethics, 3(4), 99-111.
-
(2008)
Journal of Empirical Research on Human Research Ethics
, vol.3
, Issue.4
, pp. 99-111
-
-
Wolf, L.E.1
Catania, J.A.2
Dolcini, M.M.3
Pollack, L.M.4
Lo, B.5
|