-
1
-
-
77954827460
-
The path to personalized medicine
-
Hamburg MA, Collins FS. The path to personalized medicine. N Engl J Med. 2010;363(4):301-4.
-
(2010)
N Engl J Med
, vol.363
, Issue.4
, pp. 301-304
-
-
Hamburg, M.A.1
Collins, F.S.2
-
2
-
-
84923762812
-
A new initiative on precision medicine
-
Collins FS, Varmus H. A new initiative on precision medicine. N Engl J Med. 2015;372(9):793-9.
-
(2015)
N Engl J Med
, vol.372
, Issue.9
, pp. 793-799
-
-
Collins, F.S.1
Varmus, H.2
-
4
-
-
0021511089
-
Autonomy: a moral good, not a moral obsession
-
Callahan D. Autonomy: a moral good, not a moral obsession. Hastings Cent Rep. 1984;5:40-2.
-
(1984)
Hastings Cent Rep
, vol.5
, pp. 40-42
-
-
Callahan, D.1
-
5
-
-
10644282182
-
Human genetic research: emerging trends in ethics
-
Knoppers BM, Chadwick R. Human genetic research: emerging trends in ethics. Nat Rev Genet. 2005;6(1):75-9.
-
(2005)
Nat Rev Genet
, vol.6
, Issue.1
, pp. 75-79
-
-
Knoppers, B.M.1
Chadwick, R.2
-
7
-
-
7644232196
-
The social and ethical issues of post-genomic human Biobanks
-
Cambon-Thomsen A. The social and ethical issues of post-genomic human Biobanks. Nat Rev Genet. 2004;5(11):866-73.
-
(2004)
Nat Rev Genet
, vol.5
, Issue.11
, pp. 866-873
-
-
Cambon-Thomsen, A.1
-
8
-
-
1342282436
-
Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective
-
Godard B, Schmidtke J, Cassiman J-J, Aymé S. Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective. Eur J Hum Genet. 2003;11(S2):S88-122.
-
(2003)
Eur J Hum Genet
, vol.11
, Issue.S2
, pp. S88-S122
-
-
Godard, B.1
Schmidtke, J.2
Cassiman, J.-J.3
Aymé, S.4
-
9
-
-
84903989678
-
Have we asked too much of consent?
-
Koenig BA. Have we asked too much of consent? Hastings Cent Rep. 2014;44(4):33-4.
-
(2014)
Hastings Cent Rep
, vol.44
, Issue.4
, pp. 33-34
-
-
Koenig, B.A.1
-
10
-
-
84904063146
-
Models of consent to return of incidental findings in genomic research
-
Appelbaum PS, Parens E, Waldman CR, Klitzman R, Fyer A, Martinez J, et al. Models of consent to return of incidental findings in genomic research. Hastings Cent Rep. 2014;44(4):22-32.
-
(2014)
Hastings Cent Rep
, vol.44
, Issue.4
, pp. 22-32
-
-
Appelbaum, P.S.1
Parens, E.2
Waldman, C.R.3
Klitzman, R.4
Fyer, A.5
Martinez, J.6
-
11
-
-
84866454833
-
Disclosing results to genomic research participants: differences that matter
-
Blasimme A, Soulier A, Julia S, Leonard S, Cambon-Thomsen A. Disclosing results to genomic research participants: differences that matter. Am J Bioeth. 2012;12(10):20-2.
-
(2012)
Am J Bioeth
, vol.12
, Issue.10
, pp. 20-22
-
-
Blasimme, A.1
Soulier, A.2
Julia, S.3
Leonard, S.4
Cambon-Thomsen, A.5
-
12
-
-
84873884799
-
Do researchers have an obligation to actively look for genetic incidental findings?
-
Gliwa C, Berkman BE. Do researchers have an obligation to actively look for genetic incidental findings? Am J Bioeth. 2013;13(2):32-42.
-
(2013)
Am J Bioeth
, vol.13
, Issue.2
, pp. 32-42
-
-
Gliwa, C.1
Berkman, B.E.2
-
13
-
-
84873918959
-
Genomic incidental findings: reducing the burden to be fair
-
Anastasova V, Blasimme A, Julia S, Cambon-Thomsen A. Genomic incidental findings: reducing the burden to be fair. Am J Bioeth. 2013;13(2):52-4.
-
(2013)
Am J Bioeth
, vol.13
, Issue.2
, pp. 52-54
-
-
Anastasova, V.1
Blasimme, A.2
Julia, S.3
Cambon-Thomsen, A.4
-
14
-
-
84887441653
-
Genetic incidental findings: autonomy regained?
-
Vayena E, Tasioulas J. Genetic incidental findings: autonomy regained? Genet Med. 2013b. 15 (11): 868-70.
-
(2013)
Genet Med
, vol.15
, Issue.11
, pp. 868-870
-
-
Vayena, E.1
Tasioulas, J.2
-
15
-
-
84859988417
-
Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago
-
Lemke AA, Halverson C, Ross LF. Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago. Am J Med Genet A. 2012;158A(5):1029-37. doi:10.1002/ajmg.a.34414.
-
(2012)
Am J Med Genet A
, vol.158A
, Issue.5
, pp. 1029-1037
-
-
Lemke, A.A.1
Halverson, C.2
Ross, L.F.3
-
16
-
-
80055083528
-
A communitarian turn in bioethics: myth or reality?
-
Chadwick R. A communitarian turn in bioethics: myth or reality? Camb Q Healthc Ethics. 2011;20:546-53.
-
(2011)
Camb Q Healthc Ethics
, vol.20
, pp. 546-553
-
-
Chadwick, R.1
-
18
-
-
68449097072
-
Public Health Genomics (PHG) and public participation: points to consider
-
Avard D, Bucci LM, Burgess MM, Kaye J, Heeney C, Farmer Y, Cambon-Thomsen A. Public Health Genomics (PHG) and public participation: points to consider. J Public Deliberation. 2009;5(1):7.
-
(2009)
J Public Deliberation
, vol.5
, Issue.1
, pp. 7
-
-
Avard, D.1
Bucci, L.M.2
Burgess, M.M.3
Kaye, J.4
Heeney, C.5
Farmer, Y.6
Cambon-Thomsen, A.7
-
19
-
-
67349132836
-
Data sharing in genomics - re-shaping scientific practice
-
Kaye J, Heeney C, Hawkins N, de Vries J, Boddington P. Data sharing in genomics - re-shaping scientific practice. Nat Rev Genet. 2009;10(5):331-35.
-
(2009)
Nat Rev Genet
, vol.10
, Issue.5
, pp. 331-335
-
-
Kaye, J.1
Heeney, C.2
Hawkins, N.3
De Vries, J.4
Boddington, P.5
-
20
-
-
67449097690
-
Engaging the public on biobanks: outcomes of the BC biobank deliberation
-
O’Doherty KC, Burgess MM. Engaging the public on biobanks: outcomes of the BC biobank deliberation. Public Health Genomics. 2009;12(4):203-15.
-
(2009)
Public Health Genomics
, vol.12
, Issue.4
, pp. 203-215
-
-
O’Doherty, K.C.1
Burgess, M.M.2
-
21
-
-
80052727155
-
Public involvement in health genomics: the reality behind the policies
-
Avard D, Stanton Jean M, Grégoire G, Page M. Public involvement in health genomics: the reality behind the policies. Int J Consum Stud. 2010;34(5):508-24.
-
(2010)
Int J Consum Stud
, vol.34
, Issue.5
, pp. 508-524
-
-
Avard, D.1
Stanton Jean, M.2
Grégoire, G.3
Page, M.4
-
22
-
-
77949653046
-
Ethical implications of the use of whole genome methods in medical research
-
Kaye J, Boddington P, de Vries J, Hawkins N, Melham K. Ethical implications of the use of whole genome methods in medical research. Eur J Hum Genet. 2010;18(4):398-403.
-
(2010)
Eur J Hum Genet
, vol.18
, Issue.4
, pp. 398-403
-
-
Kaye, J.1
Boddington, P.2
De Vries, J.3
Hawkins, N.4
Melham, K.5
-
23
-
-
77951472041
-
Framing genomics, public health research and policy: points to consider
-
Knoppers BM, Leroux T, Doucet H, Godard B, Laberge C, Stanton-Jean M, et al. Framing genomics, public health research and policy: points to consider. Public Health Genomics. 2010;13(4):224-34.
-
(2010)
Public Health Genomics
, vol.13
, Issue.4
, pp. 224-234
-
-
Knoppers, B.M.1
Leroux, T.2
Doucet, H.3
Godard, B.4
Laberge, C.5
Stanton-Jean, M.6
-
24
-
-
77951473507
-
Structuring public engagement for effective input in policy development on human tissue biobanking
-
O’Doherty KC, Hawkins A. Structuring public engagement for effective input in policy development on human tissue biobanking. Public Health Genomics. 2010;13(4):197-206.
-
(2010)
Public Health Genomics
, vol.13
, Issue.4
, pp. 197-206
-
-
O’Doherty, K.C.1
Hawkins, A.2
-
25
-
-
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):371-76.
-
(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
-
26
-
-
84912569761
-
Redefining genomic privacy: trust and empowerment
-
Erlich Y, Williams JB, Glazer D, Yocum K, Farahany N, Olson M, et al. Redefining genomic privacy: trust and empowerment. PLoS Biol. 2014;12(11):e1001983.
-
(2014)
PLoS Biol
, vol.12
, Issue.11
, pp. e1001983
-
-
Erlich, Y.1
Williams, J.B.2
Glazer, D.3
Yocum, K.4
Farahany, N.5
Olson, M.6
-
27
-
-
84893333048
-
Subjects no more: What happens when trial participants realize they hold the power?
-
Wicks P, Vaughan T, Heywood J. Subjects no more: What happens when trial participants realize they hold the power? BMJ. 2014;348:g368.
-
(2014)
BMJ
, vol.348
, pp. g368
-
-
Wicks, P.1
Vaughan, T.2
Heywood, J.3
-
28
-
-
84930789563
-
From passengers to co-pilots: patient roles expand
-
Anderson M, McCleary KK. From passengers to co-pilots: patient roles expand. Sci Transl Med. 2015;7(291):291fs25.
-
(2015)
Sci Transl Med
, vol.7
, Issue.291
, pp. 291fs25
-
-
Anderson, M.1
McCleary, K.K.2
-
29
-
-
80052847587
-
Reforming the regulations governing research with human subjects
-
Emanuel EJ, Menikoff J. Reforming the regulations governing research with human subjects. N Engl J Med. 2011;365(12):1145-50.
-
(2011)
N Engl J Med
, vol.365
, Issue.12
, pp. 1145-1150
-
-
Emanuel, E.J.1
Menikoff, J.2
-
30
-
-
84949426468
-
Bringing the common rule into the 21st century
-
Hudson KL, Collins FS. Bringing the common rule into the 21st century. N Engl J Med. 2015;373:2293-6.
-
(2015)
N Engl J Med
, vol.373
, pp. 2293-2296
-
-
Hudson, K.L.1
Collins, F.S.2
-
31
-
-
29144521919
-
Autonomy, Toleration, and the Harm Principle
-
S Mendon Cambridge University Press Cambridge
-
Raz J. Autonomy, Toleration, and the Harm Principle. In: Mendon S, editor. Justifying Toleration: Conceptual and Historical Perspectives. Cambridge: Cambridge University Press; 1988. p. 155-75.
-
(1988)
Justifying Toleration: Conceptual and Historical Perspectives
, pp. 155-175
-
-
Raz, J.1
-
32
-
-
33745623112
-
Public deliberation and governance: engaging with science and technology in contemporary Europe
-
Hagendijk R, Irwin A. Public deliberation and governance: engaging with science and technology in contemporary Europe. Minerva. 2006;44(2):167-84.
-
(2006)
Minerva
, vol.44
, Issue.2
, pp. 167-184
-
-
Hagendijk, R.1
Irwin, A.2
-
33
-
-
77749324866
-
Public bioethics and public engagement: the politics of ‘proper Talk’
-
Moore A. Public bioethics and public engagement: the politics of ‘proper Talk’. Public Underst Sci. 2010;19(2):197-211.
-
(2010)
Public Underst Sci
, vol.19
, Issue.2
, pp. 197-211
-
-
Moore, A.1
-
34
-
-
84864803127
-
Theoretical directions for an emancipatory concept of patient and public involvement
-
Gibson A, Britten N, Lynch J. Theoretical directions for an emancipatory concept of patient and public involvement. Health. 2012;16(5):531-47.
-
(2012)
Health
, vol.16
, Issue.5
, pp. 531-547
-
-
Gibson, A.1
Britten, N.2
Lynch, J.3
-
35
-
-
84890875707
-
Participatory medicine: a driving force for revolutionizing healthcare
-
10.1186/gm514 Hood L, Auffray C. Participatory medicine: a driving force for revolutionizing healthcare. Genome Med. 2013;5(12):110. 10.1186/gm514.
-
Hood L, Auffray C. Participatory medicine: a driving force for revolutionizing healthcare. Genome Med. 2013;5(12):110. doi:10.1186/gm514.
-
(2013)
Genome Med
, vol.5
, Issue.12
, pp. 110
-
-
Hood, L.1
Auffray, C.2
-
36
-
-
84875438870
-
Adapting standards: ethical oversight of participant-led health research
-
Vayena E, Tasioulas J. Adapting standards: ethical oversight of participant-led health research. PLoS Med. 2013;10(3):e1001402.
-
(2013)
PLoS Med
, vol.10
, Issue.3
, pp. e1001402
-
-
Vayena, E.1
Tasioulas, J.2
-
37
-
-
84929593597
-
Research led by participants: a new social contract for a new kind of research
-
Vayena E, Brownsword R, Edwards SJ, Greshake B, Kahn JP, Ladher N, Montgomery J, O'Connor D, O'Neill O, Richards MP, Rid A, Sheehan M, Wicks P, Tasioulas J. Research led by participants: a new social contract for a new kind of research. J Med Ethics. 2016;42(4):216-9.
-
(2016)
J Med Ethics
, vol.42
, Issue.4
, pp. 216-219
-
-
Vayena, E.1
Brownsword, R.2
Edwards, S.J.3
Greshake, B.4
Kahn, J.P.5
Ladher, N.6
Montgomery, J.7
O'Connor, D.8
O'Neill, O.9
Richards, M.P.10
Rid, A.11
Sheehan, M.12
Wicks, P.13
Tasioulas, J.14
-
38
-
-
77952487204
-
Facing diversity: the case of epistemic abstinence
-
Raz J. Facing diversity: the case of epistemic abstinence. Philos Public Aff. 1990;19(1):3-46.
-
(1990)
Philos Public Aff
, vol.19
, Issue.1
, pp. 3-46
-
-
Raz, J.1
-
39
-
-
0010030912
-
Philosophical reflections on experimenting with human subjects
-
Jonas H. Philosophical reflections on experimenting with human subjects. Daedalus. 1969;98(2):219-47.
-
(1969)
Daedalus
, vol.98
, Issue.2
, pp. 219-247
-
-
Jonas, H.1
-
40
-
-
0015841835
-
The regulation of human research--reflections and proposals
-
Katz J. The regulation of human research--reflections and proposals. Clin Res. 1973;21(4):785-91.
-
(1973)
Clin Res
, vol.21
, Issue.4
, pp. 785-791
-
-
Katz, J.1
-
41
-
-
0027666385
-
Human experimentation and human rights
-
Katz J. Human experimentation and human rights. Saint Louis Univ Law J. 1993;38:7.
-
(1993)
Saint Louis Univ Law J
, vol.38
, pp. 7
-
-
Katz, J.1
-
43
-
-
85012980087
-
Tailored to you: public engagement and the political legitimation of precision medicine
-
press
-
Blasimme A, Vayena E. Tailored to you: public engagement and the political legitimation of precision medicine. Perspect Biol Med. 2016 (in press).
-
(2016)
Perspect Biol Med
-
-
Blasimme, A.1
Vayena, E.2
-
44
-
-
84925583982
-
Direct-to-consumer genomics on the scales of autonomy
-
Vayena E. Direct-to-consumer genomics on the scales of autonomy. J Med Ethics. 2015;41(4):310-4.
-
(2015)
J Med Ethics
, vol.41
, Issue.4
, pp. 310-314
-
-
Vayena, E.1
|