-
1
-
-
79151476271
-
Disclosure of individual genetic data to research participants: The debate reconsidered
-
Bredenoord AL, Kroes HY, Cuppen E, Parker M, van Delden JJ. Disclosure of individual genetic data to research participants: the debate reconsidered. Trends Genet 2011;27:41-47.
-
(2011)
Trends Genet
, vol.27
, pp. 41-47
-
-
Bredenoord, A.L.1
Kroes, H.Y.2
Cuppen, E.3
Parker, M.4
Van Delden, J.J.5
-
2
-
-
29944440965
-
Implications of disclosing individual results of clinical research
-
author reply 37-38
-
Clayton EW, Ross LF. Implications of disclosing individual results of clinical research. JAMA 2006;295:37; author reply 37-38.
-
(2006)
JAMA
, vol.295
, pp. 37
-
-
Clayton, E.W.1
Ross, L.F.2
-
3
-
-
33750620340
-
Relationships with test-tubes: Where's the reciprocity?
-
author reply W10-12
-
Fryer-Edwards K, Fullerton SM. Relationships with test-tubes: where's the reciprocity? Am J Bioeth 2006;6:36-38; author reply W10-12.
-
(2006)
Am J Bioeth
, vol.6
, pp. 36-38
-
-
Fryer-Edwards, K.1
Fullerton, S.M.2
-
4
-
-
33750613452
-
Taking our obligations to research participants seriously: Disclosing individual results of genetic research
-
author reply W10-12
-
Manolio TA. Taking our obligations to research participants seriously: disclosing individual results of genetic research. Am J Bioeth 2006;6:32-34; author reply W10-12.
-
(2006)
Am J Bioeth
, vol.6
, pp. 32-34
-
-
Manolio, T.A.1
-
5
-
-
33750624177
-
Undesirable implications of disclosing individual genetic results to research participants
-
author reply W10-12
-
Meltzer LA. Undesirable implications of disclosing individual genetic results to research participants. Am J Bioeth 2006;6:28-30; author reply W10-12.
-
(2006)
Am J Bioeth
, vol.6
, pp. 28-30
-
-
Meltzer, L.A.1
-
6
-
-
44949211505
-
Managing incidental findings in human subjects research: Analysis and recommendations
-
Wolf SM, Lawrenz FP, Nelson CA, et al. Managing incidental findings in human subjects research: analysis and recommendations. J Law Med Ethics 2008;36:219-248, 211.
-
(2008)
J Law Med Ethics
, vol.36
-
-
Wolf, S.M.1
Lawrenz, F.P.2
Nelson, C.A.3
-
7
-
-
80053294772
-
Population biobanks and returning individual research results: Mission impossible or new directions?
-
Wallace SE, Kent A. Population biobanks and returning individual research results: mission impossible or new directions? Hum Genet 2011;130:393-401.
-
(2011)
Hum Genet
, vol.130
, pp. 393-401
-
-
Wallace, S.E.1
Kent, A.2
-
8
-
-
38549085235
-
Research ethics and the challenge of whole-genome sequencing
-
DOI 10.1038/nrg2302, PII NRG2302
-
McGuire AL, Caulfield T, Cho MK. Research ethics and the challenge of whole-genome sequencing. Nat Rev Genet 2008;9:152-156. (Pubitemid 351147709)
-
(2008)
Nature Reviews Genetics
, vol.9
, Issue.2
, pp. 152-156
-
-
McGuire, A.L.1
Caulfield, T.2
Cho, M.K.3
-
9
-
-
23344451021
-
Disclosing individual results of clinical research: Implications of respect for participants
-
DOI 10.1001/jama.294.6.737
-
Shalowitz DI, Miller FG. Disclosing individual results of clinical research: implications of respect for participants. JAMA 2005;294:737-740. (Pubitemid 41159294)
-
(2005)
Journal of the American Medical Association
, vol.294
, Issue.6
, pp. 737-740
-
-
Shalowitz, D.I.1
Miller, F.G.2
-
10
-
-
69749091289
-
Is it ethical to deny genetic research participants individualised results?
-
Affleck P. Is it ethical to deny genetic research participants individualised results? J Med Ethics 2009;35:209-213.
-
(2009)
J Med Ethics
, vol.35
, pp. 209-213
-
-
Affleck, P.1
-
11
-
-
33750631748
-
Disclosing individual genetic results to research participants
-
DOI 10.1080/15265160600934772, PII K2052P45R4645537
-
Ravitsky V, Wilfond BS. Disclosing individual genetic results to research participants. Am J Bioeth 2006;6:8-17. (Pubitemid 44691474)
-
(2006)
American Journal of Bioethics
, vol.6
, Issue.6
, pp. 8-17
-
-
Ravitsky, V.1
Wilfond, B.S.2
-
12
-
-
33750613783
-
Questions, complexities, and limitations in disclosing individual genetic results
-
author reply W10-12
-
Klitzman R. Questions, complexities, and limitations in disclosing individual genetic results. Am J Bioeth 2006;6:34-36; author reply W10-12.
-
(2006)
Am J Bioeth
, vol.6
, pp. 34-36
-
-
Klitzman, R.1
-
13
-
-
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
-
14
-
-
78650190160
-
Preferences regarding genetic research results: Comparing veterans and nonveterans responses
-
Arar N, Seo J, Lee S, et al. Preferences regarding genetic research results: comparing veterans and nonveterans responses. Public Health Genomics 2010;13:431-439.
-
(2010)
Public Health Genomics
, vol.13
, pp. 431-439
-
-
Arar, N.1
Seo, J.2
Lee, S.3
-
15
-
-
78349267947
-
Communication of biobanks' research results: What do (potential) participants want?
-
Meulenkamp TM, Gevers SK, Bovenberg JA, Koppelman GH, van Hylckama Vlieg A, Smets EM. Communication of biobanks' research results: what do (potential) participants want? Am J Med Genet A 2010;152A:2482-2492.
-
(2010)
Am J Med Genet A
, vol.152 A
, pp. 2482-2492
-
-
Meulenkamp, T.M.1
Gevers, S.K.2
Bovenberg, J.A.3
Koppelman, G.H.4
Van Hylckama Vlieg, A.5
Smets, E.M.6
-
16
-
-
33750625575
-
Clinical utility and full disclosure of genetic results to research participants
-
author reply W10-12
-
Sharp RR, Foster MW. Clinical utility and full disclosure of genetic results to research participants. Am J Bioeth 2006;6:42-4; author reply W10-12.
-
(2006)
Am J Bioeth
, vol.6
, pp. 42-44
-
-
Sharp, R.R.1
Foster, M.W.2
-
17
-
-
33847347280
-
The return of research results to participants: Pilot questionnaire of adolescents and parents of children with cancer
-
DOI 10.1002/pbc.20766
-
Fernandez CV, Santor D, Weijer C, et al. The return of research results to participants: pilot questionnaire of adolescents and parents of children with cancer. Pediatr Blood Cancer 2007;48:441-446. (Pubitemid 46340111)
-
(2007)
Pediatric Blood and Cancer
, vol.48
, Issue.4
, pp. 441-446
-
-
Fernandez, C.V.1
Santor, D.2
Weijer, C.3
Strahlendorf, C.4
Moghrabi, A.5
Pentz, R.6
Gao, J.7
Kodish, E.8
-
18
-
-
70349556038
-
Prospective biorepository participants' perspectives on access to research results
-
Beskow LM, Smolek SJ. Prospective biorepository participants' perspectives on access to research results. J Empir Res Hum Res Ethics 2009;4:99-111.
-
(2009)
J Empir Res Hum Res Ethics
, vol.4
, pp. 99-111
-
-
Beskow, L.M.1
Smolek, S.J.2
-
19
-
-
80053386108
-
Public perspectives on returning genetics and genomics research results
-
O'Daniel J, Haga SB. Public perspectives on returning genetics and genomics research results. Public Health Genomics 2011;14:346-355.
-
(2011)
Public Health Genomics
, vol.14
, pp. 346-355
-
-
O'Daniel, J.1
Haga, S.B.2
-
20
-
-
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;10:831-839.
-
(2008)
Genet Med
, vol.10
, pp. 831-839
-
-
Kaufman, D.1
Murphy, J.2
Scott, J.3
Hudson, K.4
-
22
-
-
77956632113
-
-
Updated 2010. Accessed 15 August 2011
-
National Human Genome Research Institute. Federal policy recommendations including HIPAA. http://www.genome.gov/11510216. Updated 2010. Accessed 15 August 2011.
-
Federal Policy Recommendations Including HIPAA
-
-
-
23
-
-
67650391208
-
Disclosure of research results from cancer genomic studies: State of the science
-
Dressler LG. Disclosure of research results from cancer genomic studies: state of the science. Clin Cancer Res 2009;15:4270-4276.
-
(2009)
Clin Cancer Res
, vol.15
, pp. 4270-4276
-
-
Dressler, L.G.1
-
24
-
-
84859578150
-
-
Bethesda, 8-9 July Accessed 15 August 2011
-
Office of Biorepositories and Biospecimen Research, National Cancer Institute. Summary: Workshop on release of research results to participants in biospecimen studies. Bethesda, 8-9 July 2010. http://biospecimens.cancer. gov/resources/publications/workshop/rrra.asp. Accessed 15 August 2011.
-
(2010)
Summary: Workshop on Release of Research Results to Participants in Biospecimen Studies
-
-
-
25
-
-
79951863517
-
Ethical and practical guidelines for reporting genetic research results to study participants: Updated guidelines from a National Heart, Lung, and Blood Institute working group
-
National Heart, Lung, and Blood Institute working group
-
Fabsitz RR, McGuire A, Sharp RR, et al.; National Heart, Lung, and Blood Institute working group. Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group. Circ Cardiovasc Genet 2010;3:574-580.
-
(2010)
Circ Cardiovasc Genet
, vol.3
, pp. 574-580
-
-
Fabsitz, R.R.1
McGuire, A.2
Sharp, R.R.3
-
26
-
-
84859560185
-
-
Genetics and Public Policy Center Accessed 30 November 2011
-
Genetics and Public Policy Center. Proposed study video. http://www.youtube. com/watch?v=m-x81nkCP8A. Accessed 30 November 2011.
-
Proposed Study Video
-
-
-
27
-
-
34548659364
-
-
Version 8. Cambridge, MA: QSR International Pty
-
NVivo qualitative data analysis software. Version 8. Cambridge, MA: QSR International Pty, 2008.
-
(2008)
NVivo Qualitative Data Analysis Software
-
-
-
28
-
-
56649092684
-
Ethics of future disclosure of individual risk information in a genetic cohort study: A survey of donor preferences
-
Matsui K, Lie RK, Kita Y, Ueshima H. Ethics of future disclosure of individual risk information in a genetic cohort study: a survey of donor preferences. J Epidemiol 2008;18:217-224.
-
(2008)
J Epidemiol
, vol.18
, pp. 217-224
-
-
Matsui, K.1
Lie, R.K.2
Kita, Y.3
Ueshima, H.4
-
29
-
-
0037043254
-
The debate over research on stored biological samples: What do sources think?
-
Wendler D, Emanuel E. The debate over research on stored biological samples: what do sources think? Arch Intern Med 2002;162:1457-1462. (Pubitemid 34747478)
-
(2002)
Archives of Internal Medicine
, vol.162
, Issue.13
, pp. 1457-1462
-
-
Wendler, D.1
Emanuel, E.2
-
30
-
-
0026469703
-
Understanding the low uptake of presymptomatic DNA testing for Huntington's disease
-
Tibben A, Niermeijer MF, Roos RA, et al. Understanding the low uptake of presymptomatic DNA testing for Huntington's disease. Lancet 1992;340:1416.
-
(1992)
Lancet
, vol.340
, pp. 1416
-
-
Tibben, A.1
Niermeijer, M.F.2
Roos, R.A.3
|