-
1
-
-
84971292258
-
-
European Science Foundation Accessed 25 Nov 2016
-
European Science Foundation. ESF Forward Look: Personalised Medicine for the European Citizen. http://archives.esf.org/fileadmin/Public-documents/Publications/Personalised-Medicine.pdf. Accessed 25 Nov 2016.
-
ESF Forward Look: Personalised Medicine for the European Citizen
-
-
-
2
-
-
84870059904
-
Participant-Centric Initiatives: Tools to Facilitate Engagement in Research
-
Anderson N, Bragg C, Hartzler A, Edwards K. Participant-Centric Initiatives: Tools to Facilitate Engagement In Research. Appl Transl Genom. 2012;1:25-9.
-
(2012)
Appl Transl Genom
, vol.1
, pp. 25-29
-
-
Anderson, N.1
Bragg, C.2
Hartzler, A.3
Edwards, K.4
-
3
-
-
84857884564
-
Improving the recruitment activity of clinicians in randomised controlled trials: A systematic review
-
Fletcher B, Gheorghe A, Moore D, Wilson S, Damery S. Improving the recruitment activity of clinicians in randomised controlled trials: a systematic review. BMJ Open. 2012;2(1):e000496.
-
(2012)
BMJ Open
, vol.2
, Issue.1
, pp. e000496
-
-
Fletcher, B.1
Gheorghe, A.2
Moore, D.3
Wilson, S.4
Damery, S.5
-
4
-
-
77958489649
-
Hypothetical and factual willingness to participate in biobank research
-
Johnsson L, Helgesson G, Rafnar T, Halldorsdottir I, Chia KS, Eriksson S, et al. Hypothetical and factual willingness to participate in biobank research. Eur J Hum Genet. 2010;18(11):1261-4.
-
(2010)
Eur J Hum Genet
, vol.18
, Issue.11
, pp. 1261-1264
-
-
Johnsson, L.1
Helgesson, G.2
Rafnar, T.3
Halldorsdottir, I.4
Chia, K.S.5
Eriksson, S.6
-
5
-
-
21744446109
-
Informed consent, participation in, and withdrawal from a population based cohort study involving genetic analysis
-
Matsui K, Kita Y, Ueshima H. Informed consent, participation in, and withdrawal from a population based cohort study involving genetic analysis. J Med Ethics. 2005;31(7):385-92.
-
(2005)
J Med Ethics
, vol.31
, Issue.7
, pp. 385-392
-
-
Matsui, K.1
Kita, Y.2
Ueshima, H.3
-
6
-
-
0032717613
-
Barriers to participation in randomised controlled trials: A systematic review
-
Ross S, Grant A, Counsell C, Gillespie W, Russell I, Prescott R. Barriers to participation in randomised controlled trials: a systematic review. J Clin Epidemiol. 1999;52(12):1143-56.
-
(1999)
J Clin Epidemiol
, vol.52
, Issue.12
, pp. 1143-1156
-
-
Ross, S.1
Grant, A.2
Counsell, C.3
Gillespie, W.4
Russell, I.5
Prescott, R.6
-
7
-
-
84892703106
-
Factors influencing recruitment to research: Qualitative study of the experiences and perceptions of research teams
-
Newington L, Metcalfe A. Factors influencing recruitment to research: qualitative study of the experiences and perceptions of research teams. BMC Med Res Methodol. 2014;14:10.
-
(2014)
BMC Med Res Methodol
, vol.14
, pp. 10
-
-
Newington, L.1
Metcalfe, A.2
-
8
-
-
84944704929
-
Examining Barriers and Practices to Recruitment and Retention in Stroke Clinical Trials
-
Boden-Albala B, Carman H, Southwick L, Parikh NS, Roberts E, Waddy S, et al. Examining Barriers and Practices to Recruitment and Retention in Stroke Clinical Trials. Stroke. 2015;46(8):2232-7.
-
(2015)
Stroke
, vol.46
, Issue.8
, pp. 2232-2237
-
-
Boden-Albala, B.1
Carman, H.2
Southwick, L.3
Parikh, N.S.4
Roberts, E.5
Waddy, S.6
-
9
-
-
85056979056
-
Why take part in personalised cancer research? Patients' genetic misconception, genetic responsibility and incomprehension of stratification-an empirical-ethical examination
-
Perry J, Wohlke S, Hessling AC, Schicktanz S. Why take part in personalised cancer research? Patients' genetic misconception, genetic responsibility and incomprehension of stratification-an empirical-ethical examination. Eur J Cancer Care (Engl) 2016.
-
(2016)
Eur J Cancer Care (Engl)
-
-
Perry, J.1
Wohlke, S.2
Hessling, A.C.3
Schicktanz, S.4
-
10
-
-
84941331033
-
Research participants' perceptions and views on consent for biobank research: A review of empirical data and ethical analysis
-
D'Abramo F, Schildmann J, Vollmann J. Research participants' perceptions and views on consent for biobank research: a review of empirical data and ethical analysis. BMC Med Ethics. 2015;16:60.
-
(2015)
BMC Med Ethics
, vol.16
, pp. 60
-
-
D'Abramo, F.1
Schildmann, J.2
Vollmann, J.3
-
11
-
-
84949497107
-
Genome sequencing in research requires a new approach to consent
-
Budin-Ljosne I, Bentzen HB, Solbakk JH, Myklebost O. Genome sequencing in research requires a new approach to consent. Tidsskr Nor Laegeforen. 2015;135(22):2031-2.
-
(2015)
Tidsskr Nor Laegeforen
, vol.135
, Issue.22
, pp. 2031-2032
-
-
Budin-Ljosne, I.1
Bentzen, H.B.2
Solbakk, J.H.3
Myklebost, O.4
-
13
-
-
79955920651
-
Improving subject recruitment, retention, and participation in research through Peplau's theory of interpersonal relations
-
Penckofer S, Byrn M, Mumby P, Ferrans CE. Improving subject recruitment, retention, and participation in research through Peplau's theory of interpersonal relations. Nurs Sci Q. 2011;24(2):146-51.
-
(2011)
Nurs Sci Q
, vol.24
, Issue.2
, pp. 146-151
-
-
Penckofer, S.1
Byrn, M.2
Mumby, P.3
Ferrans, C.E.4
-
14
-
-
84979300814
-
Patients as key partners in rare disease drug development
-
Bronstein MG, Kakkis ED. Patients as key partners in rare disease drug development. Nat Rev Drug Discov. 2016;15(11):731-2.
-
(2016)
Nat Rev Drug Discov
, vol.15
, Issue.11
, pp. 731-732
-
-
Bronstein, M.G.1
Kakkis, E.D.2
-
15
-
-
79953066922
-
Recruitment and retention strategies in longitudinal clinical studies with low-income populations
-
Nicholson LM, Schwirian PM, Klein EG, Skybo T, Murray-Johnson L, Eneli I, et al. Recruitment and retention strategies in longitudinal clinical studies with low-income populations. Contemp Clin Trials. 2011;32(3):353-62.
-
(2011)
Contemp Clin Trials
, vol.32
, Issue.3
, pp. 353-362
-
-
Nicholson, L.M.1
Schwirian, P.M.2
Klein, E.G.3
Skybo, T.4
Murray-Johnson, L.5
Eneli, I.6
-
16
-
-
85010807648
-
Feasibility of the "bring Your Own Device" Model in Clinical Research: Results from a Randomized Controlled Pilot Study of a Mobile Patient Engagement Tool
-
Pugliese L, Woodriff M, Crowley O, Lam V, Sohn J, Bradley S. Feasibility of the "Bring Your Own Device" Model in Clinical Research: Results from a Randomized Controlled Pilot Study of a Mobile Patient Engagement Tool. Cureus. 2016;8(3):e535.
-
(2016)
Cureus
, vol.8
, Issue.3
, pp. e535
-
-
Pugliese, L.1
Woodriff, M.2
Crowley, O.3
Lam, V.4
Sohn, J.5
Bradley, S.6
-
17
-
-
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;7(3):266-9.
-
(2006)
Lancet Oncol
, vol.7
, Issue.3
, pp. 266-269
-
-
Hansson, M.G.1
Dillner, J.2
Bartram, C.R.3
Carlson, J.A.4
Helgesson, G.5
-
18
-
-
60149102137
-
Broadening consent - And diluting ethics?
-
Hofmann B. Broadening consent - and diluting ethics? J Med Ethics. 2009;35(2):125-9.
-
(2009)
J Med Ethics
, vol.35
, Issue.2
, pp. 125-129
-
-
Hofmann, B.1
-
19
-
-
84940106820
-
Broad Consent for Research with Biological Samples: Workshop Conclusions
-
Grady C, Eckstein L, Berkman B, Brock D, Cook-Deegan R, Fullerton SM, et al. Broad Consent for Research With Biological Samples: Workshop Conclusions. Am J Bioeth. 2015;15(9):34-42.
-
(2015)
Am J Bioeth
, vol.15
, Issue.9
, pp. 34-42
-
-
Grady, C.1
Eckstein, L.2
Berkman, B.3
Brock, D.4
Cook-Deegan, R.5
Fullerton, S.M.6
-
20
-
-
84940110232
-
Going beyond the False Dichotomy of Broad or Specific Consent: A Meta-Perspective on Participant Choice in Research Using Human Tissue
-
Ploug T, Holm S. Going Beyond the False Dichotomy of Broad or Specific Consent: A Meta-Perspective on Participant Choice in Research Using Human Tissue. Am J Bioeth. 2015;15(9):44-6.
-
(2015)
Am J Bioeth
, vol.15
, Issue.9
, pp. 44-46
-
-
Ploug, T.1
Holm, S.2
-
21
-
-
0347750518
-
DNA databanks and consent: A suggested policy option involving an authorization model
-
Caulfield T, Upshur RE, Daar A. DNA databanks and consent: a suggested policy option involving an authorization model. BMC Med Ethics. 2003;4:E1.
-
(2003)
BMC Med Ethics
, vol.4
, pp. E1
-
-
Caulfield, T.1
Upshur, R.E.2
Daar, A.3
-
22
-
-
85010800309
-
-
Uppsala Universitet Accessed 25 Nov 2016
-
Lind A-S. In: Uppsala Universitet. New law for Biobank researchers http://www.crb.uu.se/biobank-perspectives/item/?tarContentId=496836. Accessed 25 Nov 2016.
-
New Law for Biobank Researchers
-
-
Lind, A.-S.1
-
24
-
-
84921382128
-
Dynamic consent: A patient interface for twenty-first century research networks
-
Kaye J, Whitley EA, Lund D, Morrison M, Teare H, Melham K. Dynamic consent: a patient interface for twenty-first century research networks. Eur J Hum Genet. 2015;23(2):141-6.
-
(2015)
Eur J Hum Genet
, vol.23
, Issue.2
, pp. 141-146
-
-
Kaye, J.1
Whitley, E.A.2
Lund, D.3
Morrison, M.4
Teare, H.5
Melham, K.6
-
25
-
-
84963544832
-
First, design for data sharing
-
Wilbanks J, Friend SH. First, design for data sharing. Nat Biotechnol. 2016;34(4):377-9.
-
(2016)
Nat Biotechnol
, vol.34
, Issue.4
, pp. 377-379
-
-
Wilbanks, J.1
Friend, S.H.2
-
26
-
-
84893864725
-
A dynamic model of patient consent to sharing of medical record data
-
Dixon WG, Spencer K, Williams H, Sanders C, Lund D, Whitley EA, et al. A dynamic model of patient consent to sharing of medical record data. BMJ. 2014;348:g1294.
-
(2014)
BMJ
, vol.348
, pp. g1294
-
-
Dixon, W.G.1
Spencer, K.2
Williams, H.3
Sanders, C.4
Lund, D.5
Whitley, E.A.6
-
27
-
-
84994558743
-
The RUDY study platform - A novel approach to patient driven research in rare musculoskeletal diseases
-
Javaid MK, Forestier-Zhang L, Watts L, Turner A, Ponte C, Teare H, et al. The RUDY study platform - a novel approach to patient driven research in rare musculoskeletal diseases. Orphanet J Rare Dis. 2016;11(1):150.
-
(2016)
Orphanet J Rare Dis
, vol.11
, Issue.1
, pp. 150
-
-
Javaid, M.K.1
Forestier-Zhang, L.2
Watts, L.3
Turner, A.4
Ponte, C.5
Teare, H.6
-
28
-
-
84959197091
-
The Cooperative Health Research in South Tyrol (CHRIS) study: Rationale, objectives, and preliminary results
-
Pattaro C, Gogele M, Mascalzoni D, Melotti R, Schwienbacher C, De Grandi A, et al. The Cooperative Health Research in South Tyrol (CHRIS) study: rationale, objectives, and preliminary results. J Transl Med. 2015;13(1):348.
-
(2015)
J Transl Med
, vol.13
, Issue.1
, pp. 348
-
-
Pattaro, C.1
Gogele, M.2
Mascalzoni, D.3
Melotti, R.4
Schwienbacher, C.5
De Grandi, A.6
-
29
-
-
85044087010
-
Towards 'Engagement 2.0': Insights from a study of dynamic consent with biobank participants
-
Teare HJ, Morrison M, Whitley EA, Kaye J. Towards 'Engagement 2.0': Insights from a study of dynamic consent with biobank participants. Digital Health. 2015;0(0):1-13.
-
(2015)
Digital Health.
, pp. 1-13
-
-
Teare, H.J.1
Morrison, M.2
Whitley, E.A.3
Kaye, J.4
-
30
-
-
84920651188
-
Testing an online, dynamic consent portal for large population biobank research
-
Thiel DB, Platt J, Platt T, King SB, Fisher N, Shelton R, et al. Testing an online, dynamic consent portal for large population biobank research. Public Health Genomics. 2015;18(1):26-39.
-
(2015)
Public Health Genomics
, vol.18
, Issue.1
, pp. 26-39
-
-
Thiel, D.B.1
Platt, J.2
Platt, T.3
King, S.B.4
Fisher, N.5
Shelton, R.6
-
31
-
-
85019312569
-
Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research
-
Boutin NT, Mathieu K, Hoffnagle AG, Allen NL, Castro VM, Morash M, et al. Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research. J Pers Med. 2016;6(2):17.
-
(2016)
J Pers Med.
, vol.6
, Issue.2
, pp. 17
-
-
Boutin, N.T.1
Mathieu, K.2
Hoffnagle, A.G.3
Allen, N.L.4
Castro, V.M.5
Morash, M.6
-
32
-
-
84983372602
-
Using digital technologies to engage with medical research: Views of myotonic dystrophy patients in Japan
-
Coathup V, Teare HJ, Minari J, Yoshizawa G, Kaye J, Takahashi MP, et al. Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan. BMC Med Ethics. 2016;17(1):51.
-
(2016)
BMC Med Ethics
, vol.17
, Issue.1
, pp. 51
-
-
Coathup, V.1
Teare, H.J.2
Minari, J.3
Yoshizawa, G.4
Kaye, J.5
Takahashi, M.P.6
-
33
-
-
84973303729
-
Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study
-
Spencer K, Sanders C, Whitley EA, Lund D, Kaye J, Dixon WG. Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study. J Med Internet Res. 2016;18(4):e66.
-
(2016)
J Med Internet Res
, vol.18
, Issue.4
, pp. e66
-
-
Spencer, K.1
Sanders, C.2
Whitley, E.A.3
Lund, D.4
Kaye, J.5
Dixon, W.G.6
-
34
-
-
84859900558
-
From patients to partners: Participant-centric initiatives in biomedical research
-
Kaye J, Curren L, Anderson N, Edwards K, Fullerton SM, Kanellopoulou N, et al. From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet. 2012;13(5):371-6.
-
(2012)
Nat Rev Genet
, vol.13
, Issue.5
, pp. 371-376
-
-
Kaye, J.1
Curren, L.2
Anderson, N.3
Edwards, K.4
Fullerton, S.M.5
Kanellopoulou, N.6
-
35
-
-
84948709579
-
Beyond and within public engagement: A broadened approach to engagement in biobanking
-
Cañada JA, Tupasela A, Snell K. Beyond and within public engagement: a broadened approach to engagement in biobanking. New Genet Soc. 2015;34(4):355-76.
-
(2015)
New Genet Soc
, vol.34
, Issue.4
, pp. 355-376
-
-
Cañada, J.A.1
Tupasela, A.2
Snell, K.3
-
36
-
-
84947026814
-
Biobank research, informed consent and society. Towards a new alliance?
-
D'Abramo F. Biobank research, informed consent and society. Towards a new alliance? J Epidemiol Community Health. 2015;69(11):1125-8.
-
(2015)
J Epidemiol Community Health
, vol.69
, Issue.11
, pp. 1125-1128
-
-
D'Abramo, F.1
-
37
-
-
84973387103
-
Dynamic consent: A possible solution to improve patient confidence and trust in how electronic patient records are used in medical research
-
Williams H, Spencer K, Sanders C, Lund D, Whitley EA, Kaye J, et al. Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research. IMIR Med Inform. 2015;3(1):e3.
-
(2015)
IMIR Med Inform
, vol.3
, Issue.1
, pp. e3
-
-
Williams, H.1
Spencer, K.2
Sanders, C.3
Lund, D.4
Whitley, E.A.5
Kaye, J.6
-
38
-
-
40949147823
-
The qualitative content analysis process
-
Elo S, Kyngas H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107-15.
-
(2008)
J Adv Nurs
, vol.62
, Issue.1
, pp. 107-115
-
-
Elo, S.1
Kyngas, H.2
-
39
-
-
84973400252
-
-
Accessed 25 Nov 2016
-
The Rudy Study. https://research.ndorms.ox.ac.uk/rudy/. Accessed 25 Nov 2016.
-
The Rudy Study
-
-
-
40
-
-
85010807663
-
-
The CHRIS Study (Cooperative Health Research In South Tyrol) Accssed 25 Nov 2016
-
The CHRIS Study (Cooperative Health Research In South Tyrol). In: EURAC Research. http://www.eurac.edu/en/research/health/biomed/projects/Pages/default.aspx. Accssed 25 Nov 2016.
-
EURAC Research
-
-
-
42
-
-
84896882531
-
Harvard Personal Genome Project: Lessons from participatory public research
-
Ball MP, Bobe JR, Chou MF, Clegg T, Estep PW, Lunshof JE, et al. Harvard Personal Genome Project: lessons from participatory public research. Genome Med. 2014;6(2):10.
-
(2014)
Genome Med
, vol.6
, Issue.2
, pp. 10
-
-
Ball, M.P.1
Bobe, J.R.2
Chou, M.F.3
Clegg, T.4
Estep, P.W.5
Lunshof, J.E.6
-
43
-
-
84975701654
-
The evolution of withdrawal: Negotiating research relationships in biobanking
-
Melham K, Moraia LB, Mitchell C, Morrison M, Teare H, Kaye J. The evolution of withdrawal: negotiating research relationships in biobanking. Life Sci Soc Policy. 2014;10(1):16.
-
(2014)
Life Sci Soc Policy
, vol.10
, Issue.1
, pp. 16
-
-
Melham, K.1
Moraia, L.B.2
Mitchell, C.3
Morrison, M.4
Teare, H.5
Kaye, J.6
-
44
-
-
84882402963
-
-
Platform for Engaging Everyone Responsibly (PEER) Accessed 25 Nov 2016
-
Platform for Engaging Everyone Responsibly (PEER). In: Genetic Alliance. http://www.geneticalliance.org/programs/biotrust/peer. Accessed 25 Nov 2016.
-
Genetic Alliance
-
-
-
45
-
-
85010727290
-
-
Genetic Alliance Accessed 25 Nov 2016
-
Genetic Alliance. http://www.geneticalliance.org/. Accessed 25 Nov 2016.
-
-
-
-
46
-
-
85010706752
-
-
Private Access, Inc. Accessed 25 Nov 2016
-
Private Access, Inc. https://www.privateaccess.info/. Accessed 25 Nov 2016.
-
-
-
-
47
-
-
80053386296
-
Public perspectives regarding data-sharing practices in genomics research
-
Haga SB, O'Daniel J. Public perspectives regarding data-sharing practices in genomics research. Public Health Genomics. 2011;14(6):319-24.
-
(2011)
Public Health Genomics
, vol.14
, Issue.6
, pp. 319-324
-
-
Haga, S.B.1
O'Daniel, J.2
-
48
-
-
33646163023
-
Human tissue samples and ethics - Attitudes of the general public in Sweden to biobank research
-
Nilstun T, Hermeren G. Human tissue samples and ethics - attitudes of the general public in Sweden to biobank research. Med Health Care Philos. 2006;9(1):81-6.
-
(2006)
Med Health Care Philos
, vol.9
, Issue.1
, pp. 81-86
-
-
Nilstun, T.1
Hermeren, G.2
-
49
-
-
84928618280
-
The impact of commercialisation and genetic data sharing arrangements on public trust and the intention to participate in biobank research
-
Critchley C, Nicol D, Otlowski M. The impact of commercialisation and genetic data sharing arrangements on public trust and the intention to participate in biobank research. Public Health Genomics. 2015;18(3):160-72.
-
(2015)
Public Health Genomics
, vol.18
, Issue.3
, pp. 160-172
-
-
Critchley, C.1
Nicol, D.2
Otlowski, M.3
-
50
-
-
85010727439
-
ELSI of Psychiatrics in Population projects
-
13-16 September 2016; Vienna, Austria
-
Mascalzoni D. ELSI of Psychiatrics in Population projects. In: European Biobank Week: 13-16 September 2016; Vienna, Austria. 2016.
-
(2016)
European Biobank Week
-
-
Mascalzoni, D.1
-
51
-
-
77956634832
-
Glad you asked: Participants' opinions of re-consent for dbGap data submission
-
Ludman EJ, Fullerton SM, Spangler L, Trinidad SB, Fujii MM, et al. Glad you asked: participants' opinions of re-consent for dbGap data submission. J Empir Res Hum Res Ethics. 2010;5(3):9-16.
-
(2010)
J Empir. Res Hum Res Ethics
, vol.5
, Issue.3
, pp. 9-16
-
-
Ludman, E.J.1
Fullerton, S.M.2
Spangler, L.3
Trinidad, S.B.4
Fujii, M.M.5
-
52
-
-
84898712059
-
Pediatric data sharing in genomic research: Attitudes and preferences of parents
-
Burstein MD, Robinson JO, Hilsenbeck SG, McGuire AL, Lau CC. Pediatric data sharing in genomic research: attitudes and preferences of parents. Pediatrics. 2014;133(4):690-7.
-
(2014)
Pediatrics
, vol.133
, Issue.4
, pp. 690-697
-
-
Burstein, M.D.1
Robinson, J.O.2
Hilsenbeck, S.G.3
McGuire, A.L.4
Lau, C.C.5
-
53
-
-
77955662068
-
Genomic research and wide data sharing: Views of prospective participants
-
Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W. Genomic research and wide data sharing: views of prospective participants. Genet Med. 2010;12(8):486-95.
-
(2010)
Genet Med
, vol.12
, Issue.8
, pp. 486-495
-
-
Trinidad, S.B.1
Fullerton, S.M.2
Bares, J.M.3
Jarvik, G.P.4
Larson, E.B.5
Burke, W.6
-
54
-
-
84878005909
-
Genotype-driven recruitment: A strategy whose time has come?
-
Budin-Ljosne I, Soye KJ, Tasse AM, Knoppers BM, Harris JR. Genotype-driven recruitment: a strategy whose time has come? BMC Med Genomics. 2013;6(1):19.
-
(2013)
BMC Med Genomics
, vol.6
, Issue.1
, pp. 19
-
-
Budin-Ljosne, I.1
Soye, K.J.2
Tasse, A.M.3
Knoppers, B.M.4
Harris, J.R.5
-
55
-
-
85010764701
-
-
23andMe Accessed 25 Nov 2016
-
23andMe. https://www.23andme.com/. Accessed 25 Nov 2016.
-
-
-
-
56
-
-
84944316022
-
Patient-centric trials for therapeutic development in precision oncology
-
Biankin AV, Piantadosi S, Hollingsworth SJ. Patient-centric trials for therapeutic development in precision oncology. Nature. 2015;526(7573):361-70.
-
(2015)
Nature
, vol.526
, Issue.7573
, pp. 361-370
-
-
Biankin, A.V.1
Piantadosi, S.2
Hollingsworth, S.J.3
-
57
-
-
10844286071
-
Uncertainty and environmental learning
-
Wynne B. Uncertainty and environmental learning. Glob Environ Chang. 1992;2(2):111-27.
-
(1992)
Glob Environ Chang
, vol.2
, Issue.2
, pp. 111-127
-
-
Wynne, B.1
-
58
-
-
84861354533
-
Power to the people: A wiki-governance model for biobanks
-
Dove ES, Joly Y, Knoppers BM. Power to the people: a wiki-governance model for biobanks. Genome Biol. 2012;13(5):158.
-
(2012)
Genome Biol
, vol.13
, Issue.5
, pp. 158
-
-
Dove, E.S.1
Joly, Y.2
Knoppers, B.M.3
-
59
-
-
84882449721
-
Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
-
Steinsbekk KS, Kare MB, Solberg B. Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? Eur J Hum Genet 2013.
-
(2013)
Eur J Hum Genet
-
-
Steinsbekk, K.S.1
Kare, M.B.2
Solberg, B.3
-
60
-
-
84878197970
-
Security and privacy in electronic health records: A systematic literature review
-
Fernandez-Aleman JL, Senor IC, Lozoya PA, Toval A. Security and privacy in electronic health records: a systematic literature review. J Biomed Inform. 2013;46(3):541-62.
-
(2013)
J Biomed Inform
, vol.46
, Issue.3
, pp. 541-562
-
-
Fernandez-Aleman, J.L.1
Senor, I.C.2
Lozoya, P.A.3
Toval, A.4
-
61
-
-
85010796460
-
Governance Through Privacy, Fairness, and Respect for Individuals
-
Baker DB, Kaye J, Terry SF. Governance Through Privacy, Fairness, and Respect for Individuals. EGEMS (Wash DC). 2016;4(2):1207.
-
(2016)
EGEMS (Wash DC)
, vol.4
, Issue.2
, pp. 1207
-
-
Baker, D.B.1
Kaye, J.2
Terry, S.F.3
-
62
-
-
84930579300
-
Informed consent for biobanking: Consensus-based guidelines for adequate comprehension
-
Beskow LM, Dombeck CB, Thompson CP, Watson-Ormond JK, Weinfurt KP. Informed consent for biobanking: consensus-based guidelines for adequate comprehension. Genet Med. 2015;17(3):226-33.
-
(2015)
Genet Med
, vol.17
, Issue.3
, pp. 226-233
-
-
Beskow, L.M.1
Dombeck, C.B.2
Thompson, C.P.3
Watson-Ormond, J.K.4
Weinfurt, K.P.5
-
63
-
-
84879556809
-
Development and pilot testing of a video-assisted informed consent process
-
Sonne SC, Andrews JO, Gentilin SM, Oppenheimer S, Obeid J, Brady K, et al. Development and pilot testing of a video-assisted informed consent process. Contemp Clin Trials. 2013;36(1):25-31.
-
(2013)
Contemp Clin Trials
, vol.36
, Issue.1
, pp. 25-31
-
-
Sonne, S.C.1
Andrews, J.O.2
Gentilin, S.M.3
Oppenheimer, S.4
Obeid, J.5
Brady, K.6
-
64
-
-
85010727417
-
-
Genetic Alliance UK Accessed 25 Nov 2016
-
Genome sequencing: What do patients think? Patient Charter. In: Genetic Alliance UK. 2016. https://www.geneticalliance.org.uk/media/2493/my-cancer-my-dna-patient-charter-edits-sept2016.pdf.Accessed 25 Nov 2016.
-
(2016)
Genome Sequencing: What Do Patients Think? Patient Charter
-
-
-
65
-
-
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;3(3):3-11.
-
(2012)
AJOB Prim Res
, vol.3
, Issue.3
, 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
-
66
-
-
84861225247
-
Informed consent for whole genome sequencing: A qualitative analysis of participant expectations and perceptions of risks, benefits, and harms
-
Tabor HK, Stock J, Brazg T, McMillin MJ, Dent KM, Yu JH, et al. Informed consent for whole genome sequencing: a qualitative analysis of participant expectations and perceptions of risks, benefits, and harms. Am J Med Genet A. 2012;158A(6):1310-9.
-
(2012)
Am J Med Genet A
, vol.158
, Issue.6
, pp. 1310-1319
-
-
Tabor, H.K.1
Stock, J.2
Brazg, T.3
McMillin, M.J.4
Dent, K.M.5
Yu, J.H.6
-
68
-
-
84976263267
-
-
National Institutes of Health Accessed 25 Nov 2016
-
Precision Medicine Initiative Cohort Program. In: National Institutes of Health. https://www.nih.gov/precision-medicine-initiative-cohort-program. Accessed 25 Nov 2016.
-
Precision Medicine Initiative Cohort Program
-
-
-
71
-
-
84880334513
-
Improving understanding in the research informed consent process: A systematic review of 54 interventions tested in randomized control trials
-
Nishimura A, Carey J, Erwin PJ, Tilburt JC, Murad MH, McCormick JB. Improving understanding in the research informed consent process: a systematic review of 54 interventions tested in randomized control trials. BMC Med Ethics. 2013;14:28.
-
(2013)
BMC Med Ethics
, vol.14
, pp. 28
-
-
Nishimura, A.1
Carey, J.2
Erwin, P.J.3
Tilburt, J.C.4
Murad, M.H.5
McCormick, J.B.6
-
72
-
-
84975756846
-
Challenges of web-based personal genomic data sharing
-
Shabani M, Borry P. Challenges of web-based personal genomic data sharing. Life Sci Soc Policy. 2015;11:3.
-
(2015)
Life Sci Soc Policy
, vol.11
, pp. 3
-
-
Shabani, M.1
Borry, P.2
-
73
-
-
85027954654
-
Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research
-
Johnsson L, Eriksson S. Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research. Bioethics 2016.
-
(2016)
Bioethics
-
-
Johnsson, L.1
Eriksson, S.2
-
74
-
-
53149142519
-
Informed consent in the genomics era
-
Mascalzoni D, Hicks A, Pramstaller P, Wjst M. Informed consent in the genomics era. PLoS Med. 2008;5(9):e192.
-
(2008)
PLoS Med
, vol.5
, Issue.9
, pp. e192
-
-
Mascalzoni, D.1
Hicks, A.2
Pramstaller, P.3
Wjst, M.4
-
75
-
-
84962759514
-
'You should at least ask'. the expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research
-
McCormack P, Kole A, Gainotti S, Mascalzoni D, Molster C, Lochmuller H, et al. 'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research. Eur J Hum Genet. 2016;24(10):1403-8.
-
(2016)
Eur J Hum Genet.
, vol.24
, Issue.10
, pp. 1403-1408
-
-
McCormack, P.1
Kole, A.2
Gainotti, S.3
Mascalzoni, D.4
Molster, C.5
Lochmuller, H.6
-
76
-
-
42349088372
-
From genetic privacy to open consent
-
Lunshof JE, Chadwick R, Vorhaus DB, Church GM. From genetic privacy to open consent. Nat Rev Genet. 2008;9(5):406-11.
-
(2008)
Nat Rev Genet
, vol.9
, Issue.5
, pp. 406-411
-
-
Lunshof, J.E.1
Chadwick, R.2
Vorhaus, D.B.3
Church, G.M.4
-
77
-
-
85010711752
-
-
Free the data Accessed 25 Nov 2016
-
Free the data. http://www.free-the-data.org/. Accessed 25 Nov 2016.
-
-
-
|