-
1
-
-
77957959756
-
-
Code Fed. Reg. Part 50
-
Code Fed. Reg. Part 50
-
-
-
-
2
-
-
77957970969
-
-
Me. https://www.23andme.com
-
Me
-
-
-
3
-
-
77957949066
-
-
Code Fed. Reg. Part 160
-
Code Fed. Reg. Part 160
-
-
-
-
4
-
-
77957950985
-
-
Code Fed. Reg. Part 161
-
Code Fed. Reg. Part 161
-
-
-
-
5
-
-
77957963135
-
-
Code Fed. Reg. Part 46
-
Code Fed. Reg. Part 46
-
-
-
-
6
-
-
33745614587
-
The impact of presumed consent legislation on cadaveric organ donation: A cross-country study
-
Abadie A, Gay S. 2006. The impact of presumed consent legislation on cadaveric organ donation: a cross-country study. J. Health Econ. 25:599-620
-
(2006)
J. Health Econ.
, vol.25
, pp. 599-620
-
-
Abadie, A.1
Gay, S.2
-
7
-
-
33750614686
-
Impact and perceptions of mandatory tumor biopsies for correlative studies in clinical trials of novel anticancer agents
-
Agulnik M, Oza AM, Pond GR, Siu LL. 2006. Impact and perceptions of mandatory tumor biopsies for correlative studies in clinical trials of novel anticancer agents. J. Clin. Oncol. 24:4801-7
-
(2006)
J. Clin. Oncol.
, vol.24
, pp. 4801-7
-
-
Agulnik, M.1
Oza, A.M.2
Pond, G.R.3
Siu, L.L.4
-
8
-
-
0029834131
-
Statement on informed consent for genetic research
-
American Society of Human Genetics
-
American Society of Human Genetics. 1996. Statement on informed consent for genetic research. Am. J. Hum. Genet. 59:471-74
-
(1996)
Am. J. Hum. Genet.
, vol.59
, pp. 471-74
-
-
-
9
-
-
0034659819
-
Rules for research on human genetic variation\-lessons from Iceland
-
Annas G. 2000. Rules for research on human genetic variation\-lessons from Iceland. New Engl. J. Med. 342:1830-33
-
(2000)
New Engl. J. Med.
, vol.342
, pp. 1830-33
-
-
Annas, G.1
-
10
-
-
1842556267
-
Coding and consent: Moral challenges of the database project in Iceland
-
Arnason V. 2004. Coding and consent: moral challenges of the database project in Iceland. Bioethics 18:27-49
-
(2004)
Bioethics
, vol.18
, pp. 27-49
-
-
Arnason, V.1
-
11
-
-
46149097414
-
The informed consent aftermath of the genetic revolution. An Italian example of implementation
-
Artizzu F. 2008. The informed consent aftermath of the genetic revolution. An Italian example of implementation. Med. Health Care Philos. 11:181-90
-
(2008)
Med. Health Care Philos.
, vol.11
, pp. 181-90
-
-
Artizzu, F.1
-
12
-
-
70350219257
-
The ethical use of existing samples for genome research
-
Bathe OF, McGuire AL. 2009. The ethical use of existing samples for genome research. Genet. Med. 11:712-15
-
(2009)
Genet. Med.
, vol.11
, pp. 712-15
-
-
Bathe, O.F.1
McGuire, A.L.2
-
13
-
-
77957953087
-
Ethical issues in genetic epidemiology and population genetics
-
ed. SS Coughlin, TL Beauchamp, DL Weed New York: Oxford Univ. 2nd ed.
-
Beskow LM, Burke W. 2009. Ethical issues in genetic epidemiology and population genetics. In Ethics and Epidemiology, ed. SS Coughlin, TL Beauchamp, DL Weed, pp. 182-203. New York: Oxford Univ. 2nd ed.
-
(2009)
Ethics and Epidemiology
, pp. 182-203
-
-
Beskow, L.M.1
Burke, W.2
-
14
-
-
0035861017
-
Informed consent for population-based research involving genetics
-
Beskow LM, Burke W, Merz JF, Barr PA, Terry S, et al. 2001. Informed consent for population-based research involving genetics. JAMA 286:2315-21
-
(2001)
JAMA
, vol.286
, pp. 2315-21
-
-
Beskow, L.M.1
Burke, W.2
Merz, J.F.3
Barr, P.A.4
Terry, S.5
-
15
-
-
56449106586
-
Research ethics. Certificates of confidentiality and compelled disclosure of data
-
Beskow LM, Dame L, Costello EJ. 2008. Research ethics. Certificates of confidentiality and compelled disclosure of data. Science 322:1054-55
-
(2008)
Science
, vol.322
, pp. 1054-55
-
-
Beskow, L.M.1
Dame, L.2
Costello, E.J.3
-
17
-
-
53349107714
-
Informed consent for biorepositories: Assessing prospective participants' understanding and opinions
-
Beskow LM, Dean E. 2008. Informed consent for biorepositories: assessing prospective participants' understanding and opinions. Cancer Epidem. Biomar. 17:1440-51
-
(2008)
Cancer Epidem. Biomar.
, vol.17
, pp. 1440-51
-
-
Beskow, L.M.1
Dean, E.2
-
18
-
-
77952999564
-
Ethical challenges in genotype-driven research recruitment
-
Beskow LM, Linney KN, Radtke RA, Heinzen EL, Goldstein DB. 2010. Ethical challenges in genotype-driven research recruitment. Genome Res. 20:705-9
-
(2010)
Genome Res.
, vol.20
, pp. 705-9
-
-
Beskow, L.M.1
Linney, K.N.2
Radtke, R.A.3
Heinzen, E.L.4
Goldstein, D.B.5
-
19
-
-
70349556038
-
Prospective biorepository participants' perspectives on access to research results
-
Beskow LM, Smolek SJ. 2009. Prospective biorepository participants' perspectives on access to research results. J. Empir. Res. Hum. Res. 4:99-111
-
(2009)
J. Empir. Res. Hum. Res.
, vol.4
, pp. 99-111
-
-
Beskow, L.M.1
Smolek, S.J.2
-
20
-
-
33646254125
-
Reporting genetic results in research studies: Summary and recommendations of an NHLBI working group
-
Bookman EB, Langehorne AA, Eckfeldt JH, Glass KC, Jarvik GP, et al. 2006. Reporting genetic results in research studies: summary and recommendations of an NHLBI working group. Am. J. Med. Genet. A 140:1033-40
-
(2006)
Am. J. Med. Genet. A
, vol.140
, pp. 1033-40
-
-
Bookman, E.B.1
Langehorne, A.A.2
Eckfeldt, J.H.3
Glass, K.C.4
Jarvik, G.P.5
-
21
-
-
0038621620
-
A survey of genetic counselor's strategies for addressing ethical and professional challenges in practice
-
Bower MA, McCarthy VP, Bartels DM, LeRoy BS. 2002. A survey of genetic counselor's strategies for addressing ethical and professional challenges in practice. J. Genet. Couns. 11:163-87
-
(2002)
J. Genet. Couns.
, vol.11
, pp. 163-87
-
-
Bower, M.A.1
McCarthy, V.P.2
Bartels, D.M.3
Leroy, B.S.4
-
22
-
-
50549101888
-
Performing nondiagnostic research biopsies in irradiated tissue: A review of scientific, clinical, and ethical considerations
-
Brown AP, Wendler DS, Camphausen KA, Miller FG, Citrin D. 2008. Performing nondiagnostic research biopsies in irradiated tissue: a review of scientific, clinical, and ethical considerations. J. Clin. Oncol. 26:3987-94
-
(2008)
J. Clin. Oncol.
, vol.26
, pp. 3987-94
-
-
Brown, A.P.1
Wendler, D.S.2
Camphausen, K.A.3
Miller, F.G.4
Citrin, D.5
-
23
-
-
0035895292
-
Breaking the camel's back: Multicenter clinical trials and local institutional review boards
-
Burman WJ, Reves RR, Cohn DL, Schooley RT. 2001. Breaking the camel's back: multicenter clinical trials and local institutional review boards. Ann. Intern. Med. 134:152-57
-
(2001)
Ann. Intern. Med.
, vol.134
, pp. 152-57
-
-
Burman, W.J.1
Reves, R.R.2
Cohn, D.L.3
Schooley, R.T.4
-
24
-
-
38549099198
-
Biobanks and blanket consent: The proper pace of the public good and public perception rationales
-
Caulfield T. 2007. Biobanks and blanket consent: the proper pace of the public good and public perception rationales. Kings Coll. Law J. 18:209-26
-
(2007)
Kings Coll. Law J.
, vol.18
, pp. 209-26
-
-
Caulfield, T.1
-
25
-
-
0347750518
-
DNA databanks and consent: A suggested policy option involving an authorization model
-
Caulfield T, Upshur RE, Daar A. 2003. DNA databanks and consent: a suggested policy option involving an authorization model. BMC Med. Ethics 4:E1
-
(2003)
BMC Med. Ethics
, vol.4
-
-
Caulfield, T.1
Upshur, R.E.2
Daar, A.3
-
26
-
-
0035318620
-
Solidarity and equity: New ethical frameworks for genetic databases
-
Chadwick R, Berg K. 2001. Solidarity and equity: new ethical frameworks for genetic databases. Nat. Rev. Genet. 2:318-21
-
(2001)
Nat. Rev. Genet.
, vol.2
, pp. 318-21
-
-
Chadwick, R.1
Berg, K.2
-
27
-
-
15344347619
-
Research with stored biological samples: What do research participants want?
-
Chen DT, Rosenstein DL, Muthappan P, Hilsenbeck SG, Miller FG, et al. 2005. Research with stored biological samples: What do research participants want? Arch. Intern. Med. 165:652-55
-
(2005)
Arch. Intern. Med.
, vol.165
, pp. 652-55
-
-
Chen, D.T.1
Rosenstein, D.L.2
Muthappan, P.3
Hilsenbeck, S.G.4
Miller, F.G.5
-
28
-
-
29944440965
-
Implications of disclosing individual results of clinical research
-
Clayton EW, Ross LF. 2006. Implications of disclosing individual results of clinical research. JAMA 295:37
-
(2006)
JAMA
, vol.295
, pp. 37
-
-
Clayton, E.W.1
Ross, L.F.2
-
29
-
-
0028809482
-
Informed consent for genetic research on stored tissue samples
-
Clayton EW, Steinberg KK, Khoury MJ, Thomson E, Andrews L, et al. 1995. Informed consent for genetic research on stored tissue samples. JAMA 274:1786-92
-
(1995)
JAMA
, vol.274
, pp. 1786-92
-
-
Clayton, E.W.1
Steinberg, K.K.2
Khoury, M.J.3
Thomson, E.4
Andrews, L.5
-
30
-
-
51149088120
-
Genetic privacy: Whole-genome data not anonymous, challenging assumptions
-
Couzin J. 2008. Genetic privacy: whole-genome data not anonymous, challenging assumptions. Science 321:1278
-
(2008)
Science
, vol.321
, pp. 1278
-
-
Couzin, J.1
-
31
-
-
27944445754
-
Balancing privacy protections with efficient research: Institutional review boards and the use of certificates of confidentiality
-
Currie PM. 2005. Balancing privacy protections with efficient research: institutional review boards and the use of certificates of confidentiality. IRB 27:7-12
-
(2005)
IRB
, vol.27
, pp. 7-12
-
-
Currie, P.M.1
-
32
-
-
77957961475
-
-
deCODEme. 2009. http://www.decodeme.com
-
(2009)
DeCODEme
-
-
-
33
-
-
0035050575
-
Human genetic research, DNA banking and consent: A question of 'form'?
-
Deschênes M, Cardinal G, Knoppers BM, Glass KC. 2001. Human genetic research, DNA banking and consent: a question of 'form'? Clin. Genet. 59:221-39
-
(2001)
Clin. Genet.
, vol.59
, pp. 221-39
-
-
Deschênes, M.1
Cardinal, G.2
Knoppers, B.M.3
Glass, K.C.4
-
34
-
-
9644254793
-
-
for a Biospecimen Resource for the Genomic and Proteomic Era. RAND, Santa Monica, Calif.
-
Eiseman E, Bloom G, Brower J, Clancy N, Olmsted SS. 2003. Case Studies of Existing Human Tissue Repositories: "Best Practices" for a Biospecimen Resource for the Genomic and Proteomic Era. RAND, Santa Monica, Calif.
-
(2003)
Case Studies of Existing Human Tissue Repositories "best Practices"
-
-
Eiseman, E.1
Bloom, G.2
Brower, J.3
Clancy, N.4
Olmsted, S.S.5
-
35
-
-
33745596413
-
Consent and anonymization in research involving biobanks: Differing terms and norms present serious barriers to an international framework
-
Elger BS, Caplan AL. 2006. Consent and anonymization in research involving biobanks: differing terms and norms present serious barriers to an international framework. EMBO Rep. 7:661-66
-
(2006)
EMBO Rep.
, vol.7
, pp. 661-66
-
-
Elger, B.S.1
Caplan, A.L.2
-
36
-
-
4143062563
-
Oversight of human participants research: Identifying problems to evaluate reform proposals
-
Emmanuel EJ, Wood A, Fleischman AF, Bowen A, Getz K, et al. 2004. Oversight of human participants research: identifying problems to evaluate reform proposals. Ann. Intern. Med. 141:282-91
-
(2004)
Ann. Intern. Med.
, vol.141
, pp. 282-91
-
-
Emmanuel, E.J.1
Wood, A.2
Fleischman, A.F.3
Bowen, A.4
Getz, K.5
-
37
-
-
57349105254
-
Public expectations for return of results\-time to stop being paternalistic?
-
Fernandez C. 2008. Public expectations for return of results\-time to stop being paternalistic? Am. J. Bioethics 8:46-48
-
(2008)
Am. J. Bioethics
, vol.8
, pp. 46-48
-
-
Fernandez, C.1
-
38
-
-
0142149999
-
Informing study participants of research results: An ethical imperative
-
Fernandez CV, Kodish E, Weijer C. 2003. Informing study participants of research results: an ethical imperative. IRB 25:12-19
-
(2003)
IRB
, vol.25
, pp. 12-19
-
-
Fernandez, C.V.1
Kodish, E.2
Weijer, C.3
-
40
-
-
77957937717
-
-
Freedom of Information Act, PL No. 89-554, 80 Stat. 383. Amended 1996, 2002, 2007
-
Freedom of Information Act, PL No. 89-554, 80 Stat. 383. Amended 1996, 2002, 2007
-
-
-
-
41
-
-
77957932386
-
-
Genetic Alliance. 2009. http://www.geneticalliance.org
-
(2009)
Genetic Alliance
-
-
-
43
-
-
77957934976
-
-
Genome Canada
-
Genome Canada. 2008. Data Release & Resource Sharing Policy. http://www.genomecanada.ca/medias/PDF/EN/DataReleaseandResourceSharingPolicy.pdf
-
(2008)
Data Release & Resource Sharing Policy
-
-
-
44
-
-
9944249423
-
An analysis of the icelandic supreme court judgment on the health sector database act
-
Gertz R. 2004. An analysis of the Icelandic Supreme Court judgment on the Health Sector Database Act. Scripted 1:241-58
-
(2004)
Scripted
, vol.1
, pp. 241-58
-
-
Gertz, R.1
-
45
-
-
38449089111
-
The uneasy ethical and legal underpinnings of large-scale genomic biobanks
-
Greely HT. 2007. The uneasy ethical and legal underpinnings of large-scale genomic biobanks. Annu. Rev. Genomics Hum. Genet. 8:343-64
-
(2007)
Annu. Rev. Genomics Hum. Genet.
, vol.8
, pp. 343-64
-
-
Greely, H.T.1
-
46
-
-
40849139474
-
Ethical, legal, and social implications of biobanks for genetics research
-
Haga SG, Beskow LM. 2008. Ethical, legal, and social implications of biobanks for genetics research. Adv. Genet. 60:505-44
-
(2008)
Adv. Genet.
, vol.60
, pp. 505-44
-
-
Haga, S.G.1
Beskow, L.M.2
-
47
-
-
33344475590
-
Should donors be allowed to give broad consent to future biobank research?
-
Hansson MG, Dillner J, Bartram CR, Carlson JA, Helgesson G. 2006. Should donors be allowed to give broad consent to future biobank research? Lancet. Oncol. 7:266-69
-
(2006)
Lancet. Oncol.
, vol.7
, pp. 266-69
-
-
Hansson, M.G.1
Dillner, J.2
Bartram, C.R.3
Carlson, J.A.4
Helgesson, G.5
-
48
-
-
33750619451
-
Are we taking without giving in return? the ethics of research-related biopsies and the benefits of clinical trial participation
-
Helft PR, Daugherty CK. 2006. Are we taking without giving in return? The ethics of research-related biopsies and the benefits of clinical trial participation. J. Clin. Oncol. 24:4793-95
-
(2006)
J. Clin. Oncol.
, vol.24
, pp. 4793-95
-
-
Helft, P.R.1
Daugherty, C.K.2
-
49
-
-
50849101381
-
Resolving individuals contributing trace amounts of DNAtohighly complex mixtures using high-density SNP genotyping microarrays
-
Homer N, Szelinger S, Redman M, Duggan D, Tembe W, et al. 2008. Resolving individuals contributing trace amountsofDNAtohighly complex mixtures using high-density SNP genotyping microarrays.PLoS Genet. 4:e1000167
-
(2008)
PLoS Genet.
, vol.4
-
-
Homer, N.1
Szelinger, S.2
Redman, M.3
Duggan, D.4
Tembe, W.5
-
50
-
-
45549101363
-
Keeping pace with the times\-the Genetic Information Nondiscrimination Act of 2008
-
Hudson KL, Holohan MK, Collins FS. 2008. Keeping pace with the times\-the Genetic Information Nondiscrimination Act of 2008. N. Engl. J. Med. 358:2661-63
-
(2008)
N. Engl. J. Med.
, vol.358
, pp. 2661-63
-
-
Hudson, K.L.1
Holohan, M.K.2
Collins, F.S.3
-
51
-
-
56049124576
-
Patients' views on identifiability of samples and informed consent for genetic research
-
Hull SC, Sharp RR, Botkin JR, Brown M, Hughes M, et al. 2008. Patients' views on identifiability of samples and informed consent for genetic research. Am. J. Bioeth. 8:62-70
-
(2008)
Am. J. Bioeth.
, vol.8
, pp. 62-70
-
-
Hull, S.C.1
Sharp, R.R.2
Botkin, J.R.3
Brown, M.4
Hughes, M.5
-
52
-
-
77957955329
-
-
Icelandic Parliam., the Al\+ingi.
-
Icelandic Parliam., the Al\+ingi. 1998. Act on a Health Sector Database, No. 139
-
(1998)
Act on A Health Sector Database
, Issue.139
-
-
-
53
-
-
48349108322
-
2008 best practices for repositories: Collection, storage, retrieval, and distribution of biological materials for research
-
International Society for Biological and Environmental Repositories
-
International Society for Biological and Environmental Repositories. 2008. 2008 best practices for repositories: collection, storage, retrieval, and distribution of biological materials for research. Cell. Preserv. Technol. 6:5-58
-
(2008)
Cell. Preserv. Technol.
, vol.6
, pp. 5-58
-
-
-
54
-
-
70350632730
-
A new statistic and its power to infer membership in a genome-wide association study using genotype frequencies
-
Jacobs KB, Yeager M, Wacholder S, Craig D, Kraft P, et al. 2009. A new statistic and its power to infer membership in a genome-wide association study using genotype frequencies. Nat. Genet. 41:1253-57
-
(2009)
Nat. Genet.
, vol.41
, pp. 1253-57
-
-
Jacobs, K.B.1
Yeager, M.2
Wacholder, S.3
Craig, D.4
Kraft, P.5
-
55
-
-
0035900908
-
Quality of informed consent: A new measure of understanding among research subjects
-
Joffe S, Cook EF, Cleary PD, Clark JW, Weeks JC. 2001b. Quality of informed consent: a new measure of understanding among research subjects. J. Natl. Cancer Inst. 93:139-47
-
(2001)
J. Natl. Cancer Inst.
, vol.93
, pp. 139-47
-
-
Joffe, S.1
Cook, E.F.2
Cleary, P.D.3
Clark, J.W.4
Weeks, J.C.5
-
56
-
-
0032231948
-
Group identity and human diversity: Keeping biology straight from culture
-
Juengst ET. 1998. Group identity and human diversity: keeping biology straight from culture. Am. J. Hum. Genet. 63:673-77
-
(1998)
Am. J. Hum. Genet.
, vol.63
, pp. 673-77
-
-
Juengst, E.T.1
-
57
-
-
0028877054
-
Research and stored tissues: Persons as sources, samples as persons?
-
Knoppers BM, Laberge CM. 1995. Research and stored tissues: Persons as sources, samples as persons? JAMA 1806-7
-
(1995)
JAMA
, pp. 1806-7
-
-
Knoppers, B.M.1
Laberge, C.M.2
-
58
-
-
34248647304
-
Reestablishing the researcher-patient compact
-
Kohane IS, Mandl KD, Taylor PL, Holm IA, Nigrin DJ. 2007. Reestablishing the researcher-patient compact. Science 316:836-37
-
(2007)
Science
, vol.316
, pp. 836-37
-
-
Kohane, I.S.1
Mandl, K.D.2
Taylor, P.L.3
Holm, I.A.4
Nigrin, D.J.5
-
59
-
-
3042849144
-
Genomic research and human subject privacy
-
Lin Z, Owen AB, Altman RB. 2004. Genomic research and human subject privacy. Science 305:183
-
(2004)
Science
, vol.305
, pp. 183
-
-
Lin, Z.1
Owen, A.B.2
Altman, R.B.3
-
60
-
-
14844352151
-
Ethical and legal aspects of applied genomic technologies: Practical solutions
-
Manasco PK. 2005. Ethical and legal aspects of applied genomic technologies: practical solutions. Curr. Mol. Med. 5:23-28
-
(2005)
Curr. Mol. Med.
, vol.5
, pp. 23-28
-
-
Manasco, P.K.1
-
61
-
-
56049097903
-
Identifiability of DNA data: The need for consistent federal policy
-
McGuire AL. 2008. Identifiability of DNA data: the need for consistent federal policy. Am. J. Bioethics 8:75-76
-
(2008)
Am. J. Bioethics
, vol.8
, pp. 75-76
-
-
McGuire, A.L.1
-
62
-
-
33646000796
-
No longer deidentified
-
McGuire AL, Gibbs RA. 2006. No longer deidentified. Science 312:370-71
-
(2006)
Science
, vol.312
, pp. 370-71
-
-
McGuire, A.L.1
Gibbs, R.A.2
-
63
-
-
38149081397
-
DNA data sharing: Research participants' perspectives
-
McGuire AL, Hamilton JA, Lunstroth R, McCullough LB, Goldman A. 2008. DNA data sharing: research participants' perspectives. Genet. Med. 10:46-53
-
(2008)
Genet. Med.
, vol.10
, pp. 46-53
-
-
McGuire, A.L.1
Hamilton, J.A.2
Lunstroth, R.3
McCullough, L.B.4
Goldman, A.5
-
64
-
-
55549101605
-
Don't throw the baby out with the bathwater: Enabling a bottom-up approach in genome-wide association studies
-
McGuire SE, McGuire AL. 2008. Don't throw the baby out with the bathwater: enabling a bottom-up approach in genome-wide association studies. Genome. Res. 18:1683-85
-
(2008)
Genome. Res.
, vol.18
, pp. 1683-85
-
-
McGuire, S.E.1
McGuire, A.L.2
-
65
-
-
33746897353
-
Consent for genetic research in a general population: An update on the national health and nutrition examination survey experience
-
McQuillan GM, Pan Q, Porter KS. 2006. Consent for genetic research in a general population: an update on the national health and nutrition examination survey experience. Genet. Med. 8:354-60
-
(2006)
Genet. Med.
, vol.8
, pp. 354-60
-
-
McQuillan, G.M.1
Pan, Q.2
Porter, K.S.3
-
66
-
-
0037925635
-
Problematic variation in local institutional review of a multicenter genetic epidemiology study
-
McWilliams R, Hoover-Fong J, Hamosh A, Beck S, Beaty T, Cutting G. 2003. Problematic variation in local institutional review of a multicenter genetic epidemiology study. JAMA 290:360-66
-
(2003)
JAMA
, vol.290
, pp. 360-66
-
-
McWilliams, R.1
Hoover-Fong, J.2
Hamosh, A.3
Beck, S.4
Beaty, T.5
Cutting, G.6
-
67
-
-
33750624177
-
Undesirable implications of disclosing individual genetic results to research participants
-
Meltzer LA. 2006. Undesirable implications of disclosing individual genetic results to research participants. Am. J. Bioeth. 6:28-30
-
(2006)
Am. J. Bioeth.
, vol.6
, pp. 28-30
-
-
Meltzer, L.A.1
-
68
-
-
40649092107
-
Duty to disclose what? Querying the putative obligation to return research results to participants
-
Miller FA, Christensen R, Giacomini M, Robert JS. 2008. Duty to disclose what? Querying the putative obligation to return research results to participants. J. Med. Ethics 34:210-13
-
(2008)
J. Med. Ethics
, vol.34
, pp. 210-13
-
-
Miller, F.A.1
Christensen, R.2
Giacomini, M.3
Robert, J.S.4
-
70
-
-
57449085069
-
-
National Cancer Institute
-
National Cancer Institute. 2007. Best Practices for Biospecimen Resources. http://biospecimens.cancer.gov/global/pdfs/NCI-Best-Practices-060507. pdf
-
(2007)
Best Practices for Biospecimen Resources.
-
-
-
71
-
-
77957964194
-
-
National Cancer Institute. Office of Biorepositories and Biospecimen Research
-
National Cancer Institute Office of Biorepositories and Biospecimen Research. 2007. Custodianship and Ownership Issues in Biospecimen Research. http://biospecimens.cancer.gov/global/pdfs/CaOSumm.pdf
-
(2007)
Custodianship and Ownership Issues in Biospecimen Research.
-
-
-
74
-
-
33751242067
-
-
National Human Genome, Research Institute Updated December 2000
-
National Human Genome Research Institute. 1997. NHGRI Policy on Release of Human Genomic Sequence Data. http://www.genome.gov/10000910. Updated December 2000
-
(1997)
NHGRI Policy on Release of Human Genomic Sequence Data
-
-
-
76
-
-
77957958314
-
-
National Human Genome, Research Institute
-
National Human Genome Research Institute. 2009. Informed consent for genomics research. http://www.genome.gov/27026588
-
(2009)
Informed Consent for Genomics Research.
-
-
-
77
-
-
75749155367
-
-
National Institutes of Health NIH Points to Consider.
-
National Institutes of Health. 2007. Genome-Wide Association Studies (GWAS). NIH Points to Consider. http://grants.nih.gov/grants/gwas/gwas-ptc.pdf
-
(2007)
Genome-Wide Association Studies (GWAS)
-
-
-
79
-
-
75749155367
-
-
National Institutes of Health
-
National Institutes of Health. 2008. Genome-Wide Association Studies (GWAS). http://grants.nih.gov/grants/gwas/
-
(2008)
Genome-Wide Association Studies (GWAS)
-
-
-
80
-
-
84872211317
-
-
National Institutes of Health
-
National Institutes of Health. 2009. Certificates of Confidentiality Kiosk. http://grants.nih.gov/grants/policy/coc
-
(2009)
Certificates of Confidentiality Kiosk
-
-
-
81
-
-
77957969530
-
-
Navigenics. http://www.navigenics.com
-
Navigenics
-
-
-
82
-
-
77957934154
-
-
Northwestern University Northwestern Univ., Evanston, Illinois
-
Northwestern University. Consent Form and Authorization for Research. Northwestern Univ., Evanston, Illinois. https://www.nugene.org/informed-consent. doc
-
Consent Form and Authorization for Research
-
-
-
86
-
-
59849085993
-
Assessing the understanding of biobank participants
-
Ormond KE, Cirino AL, Helenowski IB, Chisholm RL, Wolf WA. 2009. Assessing the understanding of biobank participants. Am. J. Med. Genet. A 149A:188-98
-
(2009)
Am. J. Med. Genet. A
, vol.149 A
, pp. 188-98
-
-
Ormond, K.E.1
Cirino, A.L.2
Helenowski, I.B.3
Chisholm, R.L.4
Wolf, W.A.5
-
87
-
-
40649095336
-
Rethinking respect for persons enrolled in research
-
Parker LS. 2006. Rethinking respect for persons enrolled in research. Am. Soc. Bioeth. Humanit. Exch. 9:6-7
-
(2006)
Am. Soc. Bioeth. Humanit. Exch.
, vol.9
, pp. 6-7
-
-
Parker, L.S.1
-
88
-
-
77957939158
-
-
Pfizer. http://www.pfizer.com/home/
-
Pfizer.
-
-
-
89
-
-
77957930952
-
-
PriveAccess
-
PriveAccess. 2009. Welcome to Private Access. https://www.privateaccess. info/
-
(2009)
Welcome to Private Access
-
-
-
91
-
-
0031012303
-
Ethical issues in genetic research: Disclosure and informed consent
-
Reilly PR, BosharMF, Holtzman SH. 1997. Ethical issues in genetic research: disclosure and informed consent. Nat. Genet. 15:16-20
-
(1997)
Nat. Genet.
, vol.15
, pp. 16-20
-
-
Reilly, P.R.1
Boshar, M.F.2
Holtzman, S.H.3
-
92
-
-
49949093313
-
Development of a large-scale deidentified DNA biobank to enable personalized medicine
-
Roden DM, Pulley JM, Basford MA, Bernard GR, Clayton EWet al. 2008. Development of a large-scale deidentified DNA biobank to enable personalized medicine. Nature 84:362-69
-
(2008)
Nature
, vol.84
, pp. 362-69
-
-
Roden, D.M.1
Pulley, J.M.2
Basford, M.A.3
Bernard, G.R.4
Clayton, E.W.5
-
93
-
-
40449094144
-
Is GINA worth the wait?
-
RothsteinMA. 2008. Is GINA worth the wait?J. Law Med. Ethics 36:174-78
-
(2008)
J. Law Med. Ethics
, vol.36
, pp. 174-78
-
-
Rothstein, M.A.1
-
95
-
-
1642458616
-
How do institutional review boards apply the federal risk and benefit standards for pediatric research?
-
Seema S, Whittle A, Wildond B, Gensler G, Wendler D. 2004. How do institutional review boards apply the federal risk and benefit standards for pediatric research? JAMA 291:476-82
-
(2004)
JAMA
, vol.291
, pp. 476-82
-
-
Seema, S.1
Whittle, A.2
Wildond, B.3
Gensler, G.4
Wendler, D.5
-
96
-
-
23344451021
-
Disclosing individual results of clinical research: Implications of respect for participants
-
Shalowitz DI, Miller FG 2005. Disclosing individual results of clinical research: implications of respect for participants. JAMA 294:737-40
-
(2005)
JAMA
, vol.294
, pp. 737-40
-
-
Shalowitz, D.I.1
Miller, F.G.2
-
97
-
-
33750625575
-
Clinical utility and full disclosure of genetic results to research participants
-
Sharp RR, Foster MW. 2006. Clinical utility and full disclosure of genetic results to research participants. Am. J. Bioethics 6:42-44
-
(2006)
Am. J. Bioethics
, vol.6
, pp. 42-44
-
-
Sharp, R.R.1
Foster, M.W.2
-
98
-
-
0035173378
-
DbSNP: The NCBI database of genetic variation
-
Sherry ST, Ward MH, KholodovM, Baker J, Phan L, et al. 2001. dbSNP: the NCBI database of genetic variation. Nucleic Acids Res. 29:308-11
-
(2001)
Nucleic Acids Res.
, vol.29
, pp. 308-11
-
-
Sherry, S.T.1
Ward, M.H.2
Kholodov, M.3
Baker, J.4
Phan, L.5
-
100
-
-
0035116519
-
Variability among institutional review boards' decisions within the context of a multicenter trial
-
Silverman H, Hull SC, SugarmanJ. 2001. Variability among institutional review boards' decisions within the context of a multicenter trial. Crit. Care Med. 29:235-41
-
(2001)
Crit. Care Med.
, vol.29
, pp. 235-41
-
-
Silverman, H.1
Hull, S.C.2
Sugarman, J.3
-
101
-
-
0034659688
-
The Icelandic healthcare database and informed consent
-
Stefanson K, Gulcher J. 2000. The Icelandic healthcare database and informed consent. New Engl. J. Med. 342:1827-30
-
(2000)
New Engl. J. Med.
, vol.342
, pp. 1827-30
-
-
Stefanson, K.1
Gulcher, J.2
-
102
-
-
0037151930
-
Informed consent for genetic research on blood stored for more than a decade: A population based study
-
Stegmayr B, Asplund K. 2002. Informed consent for genetic research on blood stored for more than a decade: a population based study. BMJ 325:634-35
-
(2002)
BMJ
, vol.325
, pp. 634-35
-
-
Stegmayr, B.1
Asplund, K.2
-
103
-
-
34247135853
-
National population-based biobanks for genetic research
-
Swede H, Stone CL, Norwood AR. 2007. National population-based biobanks for genetic research. Genet. Med. 9:141-49
-
(2007)
Genet. Med.
, vol.9
, pp. 141-49
-
-
Swede, H.1
Stone, C.L.2
Norwood, A.R.3
-
104
-
-
55549116026
-
When consent gets in the way
-
Taylor P. 2008. When consent gets in the way. Nature 456:32-33
-
(2008)
Nature
, vol.456
, pp. 32-33
-
-
Taylor, P.1
-
105
-
-
58849142053
-
Public attitudes to the storage of blood left over from routine general practice tests and its use in research.J
-
Treweek S, Doney A, Leiman D. 2009. Public attitudes to the storage of blood left over from routine general practice tests and its use in research.J. Health Serv. Res. Policy 14:13-19
-
(2009)
Health Serv. Res. Policy
, vol.14
, pp. 13-19
-
-
Treweek, S.1
Doney, A.2
Leiman, D.3
-
106
-
-
64049115093
-
Obtaining 'fresh' consent for genetic research with biological samples archived 10 years ago
-
Vermeulen E, SchmidtMK, AaronsonNK, KuenenM, van Leeuwen FE. 2009. Obtaining 'fresh' consent for genetic research with biological samples archived 10 years ago. Eur. J. Cancer 45:1168-74
-
(2009)
Eur. J. Cancer
, vol.45
, pp. 1168-74
-
-
Vermeulen, E.1
Schmidt, M.K.2
Aaronson, N.K.3
Kuenen, M.4
Van Leeuwen, F.E.5
-
107
-
-
41349102014
-
Pleiotropic scaling of gene effects and the 'cost of complexity
-
Wagner GP, Kenney-HuntJP, PavlicevM, PeckJR, Waxman D, CheverudJM. 2008. Pleiotropic scaling of gene effects and the 'cost of complexity.' Nature 452:470-73
-
(2008)
Nature
, vol.452
, pp. 470-73
-
-
Wagner, G.P.1
Kenney-Hunt, J.P.2
Pavlicev, M.3
Peck, J.R.4
Waxman, D.5
Cheverud, J.M.6
-
108
-
-
0034682726
-
Protecting communities in biomedical research
-
Weijer C, Emanuel EJ. 2000. Protecting communities in biomedical research. Science 289:1142-44
-
(2000)
Science
, vol.289
, pp. 1142-44
-
-
Weijer, C.1
Emanuel, E.J.2
-
109
-
-
84969213492
-
Genome-wide association study of 14,000 cases of seven common diseases and 3000 shared controls
-
Wellcome Trust Case Control Consortium
-
Wellcome Trust Case Control Consortium. 2007. Genome-wide association study of 14,000 cases of seven common diseases and 3000 shared controls. Nature 447:661-78
-
(2007)
Nature
, vol.447
, pp. 661-78
-
-
-
112
-
-
23844498764
-
Quantifying the federal minimal risk standard: Implications for pediatric research without a prospect of direct benefit
-
Wendler D, Belsky L, Thompson KM, Emanuel EJ. 2005. Quantifying the federal minimal risk standard: implications for pediatric research without a prospect of direct benefit. JAMA 294:826-32
-
(2005)
JAMA
, vol.294
, pp. 826-32
-
-
Wendler, D.1
Belsky, L.2
Thompson, K.M.3
Emanuel, E.J.4
-
113
-
-
77957956374
-
The debate over research on stored biological samples: What do sources think?
-
Wendler D, Emmanuel E. 2002. The debate over research on stored biological samples: What do sources think? Arch. Intern. Med. 98:336-42
-
(2002)
Arch. Intern. Med.
, vol.98
, pp. 336-42
-
-
Wendler, D.1
Emmanuel, E.2
-
114
-
-
42149126151
-
What should research participants understand to understand they are participants in research?
-
Wendler D, Grady C. 2008. What should research participants understand to understand they are participants in research? Bioethics 22:203-8
-
(2008)
Bioethics
, vol.22
, pp. 203-8
-
-
Wendler, D.1
Grady, C.2
-
115
-
-
57849125589
-
The Genetic Information Nondiscrimination Act: Fear factor or fantasy island?
-
Wilfond BS. 2008. The Genetic Information Nondiscrimination Act: Fear factor or fantasy island? Hastings Cent. Rep. 38:11-12
-
(2008)
Hastings Cent. Rep.
, vol.38
, pp. 11-12
-
-
Wilfond, B.S.1
-
116
-
-
2442486847
-
Human genetic banking: Altruism, benefit and consent
-
Williams G, Schroeder D. 2004. Human genetic banking: altruism, benefit and consent. New Genet. Soc. 23:89-103
-
(2004)
New Genet. Soc.
, vol.23
, pp. 89-103
-
-
Williams, G.1
Schroeder, D.2
-
117
-
-
77949392212
-
Declaration of helsinki: Ethical principles for medical research involving human subjects
-
World Med. Assoc Helsinki. Revised Tokyo, 1974; Venice, 1983; Hong Kong, 1989; Somerset West, S. Afr., 1996; Edinburgh, 2000
-
World Med. Assoc. 1964. Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. World Med. Assoc., Helsinki. Revised Tokyo, 1974; Venice, 1983; Hong Kong, 1989; Somerset West, S. Afr., 1996; Edinburgh, 2000
-
(1964)
World Med. Assoc.
-
-
-
118
-
-
77957947629
-
-
UK Biobank
-
UK Biobank. 2010. Information leaflet. http://www.ukbiobank.ac.uk/docs/ BIOINFOBK14920410. pdf
-
(2010)
Information Leaflet.
-
-
|