-
3
-
-
0003392972
-
-
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Available at: Accessed June 29, 2009
-
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Belmont report: ethical principles and guidelines for the protection of human subjects of research. Available at: http://ohsr.od.nih. gov/ guidelines/belmont.html. Accessed June 29, 2009.
-
Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research
-
-
-
5
-
-
72249104179
-
-
45 CFR §46.116(a) (1991)
-
45 CFR §46.116(a) (1991).
-
-
-
-
6
-
-
38449089111
-
The uneasy ethical and legal underpinnings of large-scale genomic biobanks
-
Greely HT. The uneasy ethical and legal underpinnings of large-scale genomic biobanks. Annu Rev Genomics Hum Genet. 2007;8:343-364.
-
(2007)
Annu Rev Genomics Hum Genet
, vol.8
, pp. 343-364
-
-
Greely, H.T.1
-
7
-
-
56149125663
-
Biobank research and the right to privacy
-
Ursin LO. Biobank research and the right to privacy. Theor Med Bioeth. 2008;29:267-285.
-
(2008)
Theor Med Bioeth
, vol.29
, pp. 267-285
-
-
Ursin, L.O.1
-
8
-
-
72249121998
-
-
Web site. Available at: Accessed June 29, 2009
-
UK Biobank Web site. Available at: http://www.ukbiobank.ac.uk. Accessed June 29, 2009.
-
-
-
-
9
-
-
72249098667
-
-
Northwestern University. Web site. Available at: Accessed June 29, 2009
-
Northwestern University. NUgene Project Web site. Available at: www. nugene.org. Accessed June 29, 2009.
-
-
-
-
10
-
-
78149235437
-
-
Center for Applied Genomics Web site. Available at Accessed June 29, 2009
-
Frequently asked questions. Center for Applied Genomics Web site. Available at: www.chop.edu/consumer/jsp/ division/generic.jsp?id=84933. Accessed June 29, 2009.
-
Frequently Asked Questions
-
-
-
11
-
-
84884153294
-
-
Available at: Accessed June 29, 2009
-
Kaiser Permanente Division of Research. Research program on genes, environment, and health. Available at: http://www.dor.kaiser.org/external/ Home-Default.aspx. Accessed June 29, 2009.
-
Research Program on Genes, Environment, and Health
-
-
-
13
-
-
33745596413
-
Consent and anonymization in research involving bio-banks: Differing terms and norms present serious barriers to an international framework
-
Elger BS, Caplan AL. Consent and anonymization in research involving bio-banks: differing terms and norms present serious barriers to an international framework. EMBO Rep. 2006;7:661-666.
-
(2006)
EMBO Rep
, vol.7
, pp. 661-666
-
-
Elger, B.S.1
Caplan, A.L.2
-
14
-
-
72249116836
-
-
45 CFR §46.102(f) (1991)
-
45 CFR §46.102(f) (1991).
-
-
-
-
15
-
-
72249099369
-
-
45 CFR §46.116(c)(2) (1991)
-
45 CFR §46.116(c)(2) (1991).
-
-
-
-
16
-
-
39549094008
-
Attitudes and perceptions of patients towards methods of establishing a DNA biobank
-
Pulley JM, Brace MM, Bernard GR, Masys DR. Attitudes and perceptions of patients towards methods of establishing a DNA biobank. Cell Tissue Bank. 2008;9:55-65.
-
(2008)
Cell Tissue Bank
, vol.9
, pp. 55-65
-
-
Pulley, J.M.1
Brace, M.M.2
Bernard, G.R.3
Masys, D.R.4
-
17
-
-
53349107714
-
Informed consent for biorepositories: Assessing prospective participants' understanding and opinions
-
Beskow LM, Dean E. Informed consent for biorepositories: assessing prospective participants' understanding and opinions. Cancer Epidemiol Biomarkers Prev. 2008;17:1440-1451.
-
(2008)
Cancer Epidemiol Biomarkers Prev
, vol.17
, pp. 1440-1451
-
-
Beskow, L.M.1
Dean, E.2
-
18
-
-
3543141747
-
Informed consent and biobanks: A population-based study of attitudes towards tissue donation for genetic research
-
Hoeyer K, Olofsson BO, Mjorndal T, Lynoe N. Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health. 2004; 32:224-229.
-
(2004)
Scand J Public Health
, vol.32
, pp. 224-229
-
-
Hoeyer, K.1
Olofsson, B.O.2
Mjorndal, T.3
Lynoe, N.4
-
20
-
-
2642585738
-
The case for a US prospective cohort study of genes and environment
-
DOI 10.1038/nature02628
-
Collins FS. The case for a US prospective cohort study of genes and environment. Nature. 2004;429:475-477. (Pubitemid 38715143)
-
(2004)
Nature
, vol.429
, Issue.6990
, pp. 475-477
-
-
Collins, F.S.1
-
21
-
-
33748797136
-
Genes, environment and the value of prospective cohort studies
-
DOI 10.1038/nrg1919, PII NRG1919
-
Manolio TA, Bailey-Wilson JE, Collins FS. Genes, environment and the value of prospective cohort studies. Nat Rev Genet. 2006;7:812-820. (Pubitemid 44413225)
-
(2006)
Nature Reviews Genetics
, vol.7
, Issue.10
, pp. 812-820
-
-
Manolio, T.A.1
Bailey-Wilson, J.E.2
Collins, F.S.3
-
22
-
-
33846271418
-
Merging and emerging cohorts: Necessary but not sufficient
-
DOI 10.1038/445259a, PII 445259A
-
Collins FS, Manolio TA. Merging and emerging cohorts: necessary but not sufficient. Nature. 2007;445:259. (Pubitemid 46122800)
-
(2007)
Nature
, vol.445
, Issue.7125
, pp. 259
-
-
Collins, F.S.1
Manolio, T.A.2
-
23
-
-
84859560185
-
-
Genetics and Public Policy Center Web site. Available at: Accessed June 29, 2009
-
Proposed study video. Genetics and Public Policy Center Web site. Available at: http://www.youtube.com/user/ DNApolicy. Accessed June 29, 2009.
-
Proposed Study Video
-
-
-
24
-
-
57349167685
-
Public expectations for return of results from large-cohort genetic research
-
Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K. Public expectations for return of results from large-cohort genetic research. Am J Bioeth. 2008;8:36-43.
-
(2008)
Am J Bioeth
, vol.8
, pp. 36-43
-
-
Murphy, J.1
Scott, J.2
Kaufman, D.3
Geller, G.4
LeRoy, L.5
Hudson, K.6
-
25
-
-
34548659364
-
-
[computer program]. Version 7. Doncaster, Victoria, Australia: QSR International
-
NVivo Qualitative Data Analysis Software [computer program]. Version 7. Doncaster, Victoria, Australia: QSR International; 2006.
-
(2006)
NVivo Qualitative Data Analysis Software
-
-
-
26
-
-
39749108755
-
Ethical implications of including children in a large biobank for genetic-epidemiologic research: A qualitative study of public opinion
-
DOI 10.1002/ajmg.c.30159
-
Kaufman DJ, Geller G, LeRoy L, Murphy JA, Scott J, Hudson K. Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion. Am J Med Genet C Semin Med. 2008;148:31-39. (Pubitemid 351294850)
-
(2008)
American Journal of Medical Genetics, Part C: Seminars in Medical Genetics
, vol.148
, Issue.1
, pp. 31-39
-
-
Kaufman, D.1
Geller, G.2
Leroy, L.3
Murphy, J.4
Scott, J.5
Hudson, K.6
-
28
-
-
57449115536
-
Subjects matter: A survey of public opinions about a large cohort study
-
Kaufman D, Murphy J, Scott J, Hudson K. Subjects matter: a survey of public opinions about a large cohort study. Genet Med. 2008;10:831-839.
-
(2008)
Genet Med
, vol.10
, pp. 831-839
-
-
Kaufman, D.1
Murphy, J.2
Scott, J.3
Hudson, K.4
-
29
-
-
72249088071
-
-
[computer program]. Version 16.0. Chicago, IL: SPSS Inc
-
SPSS [computer program]. Version 16.0. Chicago, IL: SPSS Inc; 2008.
-
(2008)
SPSS
-
-
-
30
-
-
72249093274
-
-
Available at: Accessed June 29, 2009
-
Research Triangle Institute. SUDAAN Version 9.0 Online Reference Manual. Available at: http://www.rti.org/ sudaan/onlinehelp/flashhelp/wf-njs.htm. Accessed June 29, 2009.
-
SUDAAN Version 9.0 Online Reference Manual
-
-
-
31
-
-
34248647304
-
Medicine: Reestablishing the researcher-patient compact
-
Kohane IS, Mandl KD, Taylor PL, Holm IA, Nigrin DJ, Kunkel LM. Medicine: reestablishing the researcher-patient compact. Science. 2007;316: 836-837.
-
(2007)
Science
, vol.316
, pp. 836-837
-
-
Kohane, I.S.1
Mandl, K.D.2
Taylor, P.L.3
Holm, I.A.4
Nigrin, D.J.5
Kunkel, L.M.6
|