-
1
-
-
34247135853
-
National populationbased biobanks for genetic research
-
Swede H, Stone CL, Norwood AR. National populationbased biobanks for genetic research. Genetics Med 2007;93: 141-149.
-
(2007)
Genetics Med
, vol.93
, pp. 141-149
-
-
Swede, H.1
Stone, C.L.2
Norwood, A.R.3
-
2
-
-
26944437969
-
Genetic epidemiology and public health: Hope, hype, and future prospects
-
3669495
-
Smith GD, Ebrahim S, Lewis S, Hansell AL, Palmer LJ, Burton PR. Genetic epidemiology and public health: Hope, hype, and future prospects. Lancet 2005;3669495:1484-1498.
-
(2005)
Lancet
, pp. 1484-1498
-
-
Smith, G.D.1
Ebrahim, S.2
Lewis, S.3
Hansell, A.L.4
Palmer, L.J.5
Burton, P.R.6
-
5
-
-
0041805504
-
Consent for genetic research in a general population: The NHANES experience
-
McQuillan GM, Porter KS, Agelli M, Kington R. Consent for genetic research in a general population: The NHANES experience. Genet Med 2003;51:35-42.
-
(2003)
Genet Med
, vol.51
, pp. 35-42
-
-
McQuillan, G.M.1
Porter, K.S.2
Agelli, M.3
Kington, R.4
-
6
-
-
0036235279
-
Racial differences in factors that influence the willingness to participate in medical research studies
-
Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol 2002;124:248-= 256.
-
(2002)
Ann Epidemiol
, vol.124
, pp. 248-256
-
-
Shavers, V.L.1
Lynch, C.F.2
Burmeister, L.F.3
-
7
-
-
2942532901
-
Colorectal cancer knowledge, perceptions, and behaviors in African Americans
-
Green PM, Kelly BA. Colorectal cancer knowledge, perceptions, and behaviors in African Americans. Cancer Nurs 2004;273:206-215.
-
(2004)
Cancer Nurs
, vol.273
, pp. 206-215
-
-
Green, P.M.1
Kelly, B.A.2
-
8
-
-
0034353679
-
Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies
-
Shavers VL, Lynch CF, Burmeister LF. Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. J Natl Med Assoc 2000;9212:563-572.
-
(2000)
J Natl Med Assoc
, vol.9212
, pp. 563-572
-
-
Shavers, V.L.1
Lynch, C.F.2
Burmeister, L.F.3
-
10
-
-
33344475590
-
Should donors be allowed to give broad consent to future biobank research?
-
Hansson MG, Dillner J, Bartram CR, Carlson JA, Helgesson G. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol 2006;73:266-269.
-
(2006)
Lancet Oncol
, vol.73
, pp. 266-269
-
-
Hansson, M.G.1
Dillner, J.2
Bartram, C.R.3
Carlson, J.A.4
Helgesson, G.5
-
11
-
-
33344475444
-
Alternative consent approaches for biobank research
-
Maschke KJ. Alternative consent approaches for biobank research. Lancet Oncol 2006;73:193-194.
-
(2006)
Lancet Oncol
, vol.73
, pp. 193-194
-
-
Maschke, K.J.1
-
14
-
-
84862610725
-
Informed consent in genome-scale research: What do prospective participants think?
-
Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W. Informed consent in genome-scale research: What do prospective participants think? AJOB Prim Res 2012;33:3-11.
-
(2012)
AJOB Prim Res
, vol.33
, pp. 3-11
-
-
Trinidad, S.B.1
Fullerton, S.M.2
Bares, J.M.3
Jarvik, G.P.4
Larson, E.B.5
Burke, W.6
-
15
-
-
38149081397
-
DNA data sharing: Research participants perspectives
-
McGuire AL, Hamilton JA, Lunstroth R, McCullough LB, Goldman A. DNA data sharing: Research participants perspectives. Genet Med 2008;101:46-53.
-
(2008)
Genet Med
, vol.101
, pp. 46-53
-
-
McGuire, A.L.1
Hamilton, J.A.2
Lunstroth, R.3
McCullough, L.B.4
Goldman, A.5
-
16
-
-
77957228179
-
Simplifying informed consent for biorepositories: Stakeholder perspectives
-
Beskow LM, y Friedman J, Hardy NC, Lin L, Weinfurt KP. Simplifying informed consent for biorepositories: Stakeholder perspectives. Genet Med 2010;129:567-572.
-
(2010)
Genet Med
, vol.129
, pp. 567-572
-
-
Beskow, L.M.1
Friedman J, Y.2
Hardy, N.C.3
Lin, L.4
Weinfurt, K.P.5
-
17
-
-
84893609873
-
Public preferences regarding informed consent models for participation in population-based genomic research
-
Platt J, Bollinger J, Dvoskin R, Kardia SL, Kaufman D. Public preferences regarding informed consent models for participation in population-based genomic research. Genet Med 2014;16:11-18.
-
(2014)
Genet Med
, vol.16
, pp. 11-18
-
-
Platt, J.1
Bollinger, J.2
Dvoskin, R.3
Kardia, S.L.4
Kaufman, D.5
-
18
-
-
76249122986
-
Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns
-
Tupasela A, Sihvo S, Snell K, Jallinoja P, Aro AR, Hemminki E. Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns. Scand J Public Health 2010;381:46-52.
-
(2010)
Scand J Public Health
, vol.381
, pp. 46-52
-
-
Tupasela, A.1
Sihvo, S.2
Snell, K.3
Jallinoja, P.4
Aro, A.R.5
Hemminki, E.6
-
19
-
-
84860490790
-
Consent for use of clinical leftover biosample: A survey among Chinese patients and the general public
-
Ma Y, Dai H, Wang L, Zhu L, Zou H, Kong X. Consent for use of clinical leftover biosample: A survey among Chinese patients and the general public. PloS One 2012; 74:e36050.
-
(2012)
PloS One
, vol.74
, pp. e36050
-
-
Ma, Y.1
Dai, H.2
Wang, L.3
Zhu, L.4
Zou, H.5
Kong, X.6
-
20
-
-
84867406227
-
Qualitative study of knowledge and attitudes to biobanking among lay persons in Nigeria
-
Igbe M, Adebamowo C. Qualitative study of knowledge and attitudes to biobanking among lay persons in Nigeria. BMC Med Ethics 2012;131:27.
-
(2012)
BMC Med Ethics
, vol.131
, pp. 27
-
-
Igbe, M.1
Adebamowo, C.2
-
21
-
-
84928486823
-
Its for a good cause, isnt it? Exploring views of South African TB research participants on sample storage and re-use
-
Van Schalkwyk G, De Vries J, Moodley K. Its for a good cause, isnt it? Exploring views of South African TB research participants on sample storage and re-use. BMC Med Ethics 2012;131:1-7.
-
(2012)
BMC Med Ethics
, vol.131
, pp. 1-7
-
-
Van Schalkwyk, G.1
De Vries, J.2
Moodley, K.3
-
22
-
-
35648983023
-
Alternatives to project-specific consent for access to personal information for health research: What is the opinion of the Canadian public?
-
Willison DJ, Schwartz L, Abelson J, et al. Alternatives to project-specific consent for access to personal information for health research: What is the opinion of the Canadian public? J Am Med Informat Assoc 2007;146: 706-712.
-
(2007)
J Am Med Informat Assoc
, vol.146
, pp. 706-712
-
-
Willison, D.J.1
Schwartz, L.2
Abelson, J.3
-
23
-
-
77954788338
-
Patients attitudes to informed consent for genomic research with donated samples
-
Valle-Mansilla JI, Ruiz-Canela M, Sulmasy DP. Patients attitudes to informed consent for genomic research with donated samples. Cancer Invest 2010;287:726-734.
-
(2010)
Cancer Invest
, vol.287
, pp. 726-734
-
-
Valle-Mansilla, J.I.1
Ruiz-Canela, M.2
Sulmasy, D.P.3
-
24
-
-
77954435949
-
An exploratory survey of professionals on the use of stored tissue samples from minors for genetic research
-
Hens K, Snoeck J, Nys H, Cassiman J, Dierickx K. An exploratory survey of professionals on the use of stored tissue samples from minors for genetic research. Genet Mol Res 2010;92:973-980.
-
(2010)
Genet Mol Res
, vol.92
, pp. 973-980
-
-
Hens, K.1
Snoeck, J.2
Nys, H.3
Cassiman, J.4
Dierickx, K.5
-
25
-
-
78149423985
-
Developing a simplified consent form for biobanking
-
Beskow LM, Friedman JY, Hardy NC, Lin L, Weinfurt KP. Developing a simplified consent form for biobanking. PLoS One 2010;510:e13302.
-
(2010)
PLoS One
, vol.510
, pp. e13302
-
-
Beskow, L.M.1
Friedman, J.Y.2
Hardy, N.C.3
Lin, L.4
Weinfurt, K.P.5
-
26
-
-
0032874638
-
Attitudes and beliefs of African Americans toward participation in medical research
-
Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S. Attitudes and beliefs of African Americans toward participation in medical research. J Gen Int Med 1999;149: 537-546.
-
(1999)
J Gen Int Med
, vol.149
, pp. 537-546
-
-
Corbie-Smith, G.1
Thomas, S.B.2
Williams, M.V.3
Moody-Ayers, S.4
-
27
-
-
84928479563
-
Strategies for enrollment of African Americans into cancer genetic studies
-
110th United States Congress. Genetic Information Nondiscrimination Act of 2008, 122 Stat. 881. 2008:110-233
-
Ewing A, Thompson N, Ricks-Santi L. Strategies for enrollment of African Americans into cancer genetic studies. J Cancer Educ 2014; 28. 110th United States Congress. Genetic Information Nondiscrimination Act of 2008, 122 Stat. 881. 2008:110-233.
-
(2014)
J Cancer Educ
, pp. 28
-
-
Ewing, A.1
Thompson, N.2
Ricks-Santi, L.3
-
28
-
-
77958489649
-
Hypothetical and factual willingness to participate in biobank research
-
Johnsson L, Helgesson G, Rafnar T, et al. Hypothetical and factual willingness to participate in biobank research. Eur J Hum Genet 2010;1811:1261-1264.
-
(2010)
Eur J Hum Genet
, vol.1811
, pp. 1261-1264
-
-
Johnsson, L.1
Helgesson, G.2
Rafnar, T.3
-
29
-
-
84859608971
-
Public preferences regarding the return of individual genetic research results: Findings from a qualitative focus group study
-
Bollinger JM, Scott J, Dvoskin R, Kaufman D. Public preferences regarding the return of individual genetic research results: Findings from a qualitative focus group study. Genet Med 2012;144:451-457.
-
(2012)
Genet Med
, vol.144
, pp. 451-457
-
-
Bollinger, J.M.1
Scott, J.2
Dvoskin, R.3
Kaufman, D.4
-
30
-
-
72249092345
-
Public perspectives on informed consent for biobanking
-
Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K. Public perspectives on informed consent for biobanking. Am J Public Health 2009;9912:2128-2134.
-
(2009)
Am J Public Health
, vol.9912
, pp. 2128-2134
-
-
Murphy, J.1
Scott, J.2
Kaufman, D.3
Geller, G.4
Leroy, L.5
Hudson, K.6
-
31
-
-
57449115536
-
Subjects matter: A survey of public opinions about a large genetic cohort study
-
Kaufman D, Murphy J, Scott J, Hudson K. Subjects matter: A survey of public opinions about a large genetic cohort study. Genet Med 2008;1011:831-839.
-
(2008)
Genet Med
, vol.1011
, pp. 831-839
-
-
Kaufman, D.1
Murphy, J.2
Scott, J.3
Hudson, K.4
-
32
-
-
2642585738
-
The case for a US prospective cohort study of genes and environment
-
4296990
-
Collins FS. The case for a US prospective cohort study of genes and environment. Nature 2004;4296990:475-477.
-
(2004)
Nature
, pp. 475-477
-
-
Collins, F.S.1
-
35
-
-
33847199736
-
Factors that influence characteristics of genetic biobanks
-
Sanner JE, Frazier L. Factors that influence characteristics of genetic biobanks. J Nurs Scholar 2007;391:25-29.
-
(2007)
J Nurs Scholar
, vol.391
, pp. 25-29
-
-
Sanner, J.E.1
Frazier, L.2
-
36
-
-
84906068664
-
Unexpected findings in the exploration of African American underrepresentation in biospecimen collection and biobanks
-
Hagiwara N, Berry-Bobovski L, Francis C, Ramsey L, Chapman RA, Albrecht TL. Unexpected findings in the exploration of African American underrepresentation in biospecimen collection and biobanks. J Cancer Edu 2014:29: 580-587.
-
(2014)
J Cancer Edu
, vol.29
, pp. 580-587
-
-
Hagiwara, N.1
Berry-Bobovski, L.2
Francis, C.3
Ramsey, L.4
Chapman, R.A.5
Albrecht, T.L.6
-
37
-
-
84856495873
-
Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: A focus group study
-
Streicher SA, Sanderson SC, Jabs EW, et al. Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: A focus group study. J Commun Genet 2011;23:153-163.
-
(2011)
J Commun Genet
, vol.23
, pp. 153-163
-
-
Streicher, S.A.1
Sanderson, S.C.2
Jabs, E.W.3
-
38
-
-
84958102769
-
Engaging diverse populations about biospecimen donation for cancer research
-
Dang JH, Rodriguez EM, Luque JS, Erwin DO, Meade CD, Chen Jr MS. Engaging diverse populations about biospecimen donation for cancer research. J Commun Genet 2014;5:313-327.
-
(2014)
J Commun Genet
, vol.5
, pp. 313-327
-
-
Dang, J.H.1
Rodriguez, E.M.2
Luque, J.S.3
Erwin, D.O.4
Meade, C.D.5
Chen, M.S.6
-
39
-
-
84880877268
-
An effective multisource informed consent procedure for research and clinical practice: An observational study of patient understanding and awareness of their roles as research stakeholders in a cancer biobank
-
Cervo S, Rovina J, Talamini R, et al. An effective multisource informed consent procedure for research and clinical practice: An observational study of patient understanding and awareness of their roles as research stakeholders in a cancer biobank. BMC Med Ethics 2013; 141:30.
-
(2013)
BMC Med Ethics
, vol.141
, pp. 30
-
-
Cervo, S.1
Rovina, J.2
Talamini, R.3
-
40
-
-
84882449721
-
Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
-
Steinsbekk KS, Myskja BK, Solberg B. Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?. Eur J Human Genet 2013;219:897-902.
-
(2013)
Eur J Human Genet
, vol.219
, pp. 897-902
-
-
Steinsbekk, K.S.1
Myskja, B.K.2
Solberg, B.3
-
41
-
-
77951130342
-
Factors influencing uptake of pharmacogenetic testing in a diverse patient population
-
ODaniel J, Lucas J, Deverka P, et al. Factors influencing uptake of pharmacogenetic testing in a diverse patient population. Public Health Genom 2010;131:48-54.
-
(2010)
Public Health Genom
, vol.131
, pp. 48-54
-
-
Odaniel, J.1
Lucas, J.2
Deverka, P.3
-
42
-
-
84861462252
-
Survey of US public attitudes toward pharmacogenetic testing
-
Haga SB, ODaniel JM, Tindall GM, Lipkus IR, Agans R. Survey of US public attitudes toward pharmacogenetic testing. Pharmacogenom J 2012;123:197-204.
-
(2012)
Pharmacogenom J
, vol.123
, pp. 197-204
-
-
Haga, S.B.1
Odaniel, J.M.2
Tindall, G.M.3
Lipkus, I.R.4
Agans, R.5
-
43
-
-
84981311502
-
Potential bias in the bank: What distinguishes refusers, nonresponders and participants in a clinic-based biobank?
-
Ridgeway JL, Han LC, Olson JE, et al. Potential bias in the bank: What distinguishes refusers, nonresponders and participants in a clinic-based biobank? Public Health Genom 2013;163:118-126.
-
(2013)
Public Health Genom
, vol.163
, pp. 118-126
-
-
Ridgeway, J.L.1
Han, L.C.2
Olson, J.E.3
-
44
-
-
84870451528
-
Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act
-
Allain DC, Friedman S, Senter L. Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act. Familial Cancer 2012;114:637-644.
-
(2012)
Familial Cancer
, vol.114
, pp. 637-644
-
-
Allain, D.C.1
Friedman, S.2
Senter, L.3
-
45
-
-
84881614326
-
Knowledge of the Genetic Information Nondiscrimination act among individuals affected byHuntington disease
-
Dorsey E, Darwin K, Nichols P, et al. Knowledge of the Genetic Information Nondiscrimination act among individuals affected byHuntington disease. Clin Genet 2013;843:251-257.
-
(2013)
Clin Genet
, vol.843
, pp. 251-257
-
-
Dorsey, E.1
Darwin, K.2
Nichols, P.3
-
46
-
-
84902117933
-
Public opinion on policy issues in genetics and genomics
-
Almeling R, Gadarian SK. Public opinion on policy issues in genetics and genomics. Genet Med 2014;16:491-494.
-
(2014)
Genet Med
, vol.16
, pp. 491-494
-
-
Almeling, R.1
Gadarian, S.K.2
-
47
-
-
84890088396
-
The bioethics commission on incidental findings
-
3426164
-
Gutmann A. The bioethics commission on incidental findings. Science 2013;3426164:1321-1323.
-
(2013)
Science
, pp. 1321-1323
-
-
Gutmann, A.1
-
48
-
-
80051985142
-
Inclusion of racial and ethnic minorities in genetic research: Advance the spirit by changing the rules?
-
Knerr S, Wayman D, Bonham VL. Inclusion of racial and ethnic minorities in genetic research: Advance the spirit by changing the rules? J Law Med Ethics 2011;393:502-512.
-
(2011)
J Law Med Ethics
, vol.393
, pp. 502-512
-
-
Knerr, S.1
Wayman, D.2
Bonham, V.L.3
-
50
-
-
80052573480
-
Active choice but not too active: Public perspectives on biobank consent models
-
Simon CM, LHeureux J, Murray JC, et al. Active choice but not too active: Public perspectives on biobank consent models. Genet Med 2011;139:821-831.
-
(2011)
Genet Med
, vol.139
, pp. 821-831
-
-
Simon, C.M.1
Lheureux, J.2
Murray, J.C.3
|