-
1
-
-
28644446593
-
Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: A global problem
-
Baars, M.J., L. Henneman, et al. 2005a. Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: A global problem. Genetics in Medicine 7(9): 605–610.
-
(2005)
Genetics in Medicine
, vol.7
, Issue.9
, pp. 605-610
-
-
Baars, M.J.1
Henneman, L.2
-
2
-
-
20444441103
-
Deficient knowledge of genetics relevant for daily practice among medical students nearing graduation
-
Baars, M.J., A.J. Scherpbier, et al. 2005b. Deficient knowledge of genetics relevant for daily practice among medical students nearing graduation. Genetics in Medicine 7(5): 295–301.
-
(2005)
Genetics in Medicine
, vol.7
, Issue.5
, pp. 295-301
-
-
Baars, M.J.1
Scherpbier, A.J.2
-
4
-
-
84879601453
-
Return of incidental findings in genomic medicine: Measuring what patients value—Development of an instrument to measure preferences for information from next-generation testing (IMPRINT)
-
Bennette, C.S., S.B. Trinidad, et al. 2013. Return of incidental findings in genomic medicine: Measuring what patients value—Development of an instrument to measure preferences for information from next-generation testing (IMPRINT). Genetics in Medicine 15(11): 873–881.
-
(2013)
Genetics in Medicine
, vol.15
, Issue.11
, pp. 873-881
-
-
Bennette, C.S.1
Trinidad, S.B.2
-
5
-
-
79959276553
-
Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time
-
Berg, J.S., M.J. Khoury, et al. 2011. Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time. Genetics in Medicine 13(6): 499–504.
-
(2011)
Genetics in Medicine
, vol.13
, Issue.6
, pp. 499-504
-
-
Berg, J.S.1
Khoury, M.J.2
-
6
-
-
84897690337
-
The “right not to know” in the genomic era: Time to break from tradition?
-
Berkman, B.E., and S.C. Hull. 2014. The “right not to know” in the genomic era: Time to break from tradition? The American Journal of Bioethics 14(3): 28–31.
-
(2014)
The American Journal of Bioethics
, vol.14
, Issue.3
, pp. 28-31
-
-
Berkman, B.E.1
Hull, S.C.2
-
7
-
-
77953664983
-
Informed decision making about predictive DNA tests: Arguments for more public visibility of personal deliberations about the good life
-
Boenink, M., and S. van der Burg. 2010. Informed decision making about predictive DNA tests: Arguments for more public visibility of personal deliberations about the good life. Medicine, Health Care and Philosophy 13(2): 127–138.
-
(2010)
Medicine, Health Care and Philosophy
, vol.13
, Issue.2
, pp. 127-138
-
-
Boenink, M.1
van der Burg, S.2
-
8
-
-
2942626227
-
What is the role of empirical research in bioethical reflection and decision-making? An ethical analysis
-
Borry, P., P. Schotsmans, et al. 2004. What is the role of empirical research in bioethical reflection and decision-making? An ethical analysis. Medicine, Health Care and Philosophy 7(1): 41–53.
-
(2004)
Medicine, Health Care and Philosophy
, vol.7
, Issue.1
, pp. 41-53
-
-
Borry, P.1
Schotsmans, P.2
-
9
-
-
84898832381
-
The genome clinic: A multidisciplinary approach to assessing the opportunities and challenges of integrating genomic analysis into clinical care
-
Bowdin, S., P. Ray, et al. 2014. The genome clinic: A multidisciplinary approach to assessing the opportunities and challenges of integrating genomic analysis into clinical care. Human Mutation 35(5): 513–519.
-
(2014)
Human Mutation
, vol.35
, Issue.5
, pp. 513-519
-
-
Bowdin, S.1
Ray, P.2
-
10
-
-
79151476271
-
Disclosure of individual genetic data to research participants: The debate reconsidered
-
Bredenoord, A., H. Kroes, et al. 2011a. Disclosure of individual genetic data to research participants: The debate reconsidered. Trends in Genetics 27(2): 41–47.
-
(2011)
Trends in Genetics
, vol.27
, Issue.2
, pp. 41-47
-
-
Bredenoord, A.1
Kroes, H.2
-
11
-
-
79960834031
-
Feedback of individual genetic results to research participants: In favor of a qualified disclosure policy
-
Bredenoord, A.L., N.C. Onland-Moret, et al. 2011b. Feedback of individual genetic results to research participants: In favor of a qualified disclosure policy. Human Mutation 32(8): 861–867.
-
(2011)
Human Mutation
, vol.32
, Issue.8
, pp. 861-867
-
-
Bredenoord, A.L.1
Onland-Moret, N.C.2
-
13
-
-
84874109945
-
To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts
-
Christenhusz, G. M., K. Devriendt. 2013a. To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts. European Journal of Human Genetics 21: 248-255.
-
(2013)
European Journal of Human Genetics
, vol.21
, pp. 248-255
-
-
-
14
-
-
84885385245
-
Disclosing incidental findings in genetics contexts: A review of the empirical ethical research
-
Christenhusz, G. M., K. Devriendt, et al. 2013b. Disclosing incidental findings in genetics contexts: A review of the empirical ethical research. European Journal of Medical Genetics 56(10): 529-540.
-
(2013)
European Journal of Medical Genetics
, vol.56
, Issue.10
, pp. 529-540
-
-
Christenhusz, G.M.1
Devriendt, K.2
-
15
-
-
84887627966
-
Secondary variants: In defense of a more fitting term in the incidental findings debate
-
Christenhusz, G. M., K. Devriendt, et al. 2013c. Secondary variants: In defense of a more fitting term in the incidental findings debate. European Journal of Human Genetics 21: 1331-1334.
-
(2013)
European Journal of Human Genetics
, vol.21
, pp. 1331-1334
-
-
Christenhusz, G.M.1
Devriendt, K.2
-
16
-
-
84907598143
-
The communication of secondary variants: Interviews with parents whose children have undergone array-CGH testing
-
Christenhusz, G. M., K. Devriendt, et al. 2014. The communication of secondary variants: Interviews with parents whose children have undergone array-CGH testing. Clinical Genetics 86: 207-216.
-
(2014)
Clinical Genetics
, vol.86
, pp. 207-216
-
-
Christenhusz, G.M.1
Devriendt, K.2
-
17
-
-
84933188981
-
Ethical aspects of genetic testing and the return of secondary variants in the new genomic era
-
Leuven, Belgium
-
Christenhusz, G. M. 2014. Ethical aspects of genetic testing and the return of secondary variants in the new genomic era. KU Leuven, Leuven, Belgium.
-
(2014)
KU Leuven
-
-
Christenhusz, G.M.1
-
18
-
-
84878935062
-
How could disclosing incidental information from whole-genome sequencing affect patient behavior?
-
Christensen, K.D., and R.C. Green. 2013. How could disclosing incidental information from whole-genome sequencing affect patient behavior? Personalized Medicine 10(4): 377–386.
-
(2013)
Personalized Medicine
, vol.10
, Issue.4
, pp. 377-386
-
-
Christensen, K.D.1
Green, R.C.2
-
19
-
-
0029059310
-
GIG response to the UK Clinical Genetics Society report “The genetic testing of children
-
Dalby, S. 1995. GIG response to the UK Clinical Genetics Society report “The genetic testing of children”. Journal of Medical Genetics 32(6): 490–491.
-
(1995)
Journal of Medical Genetics
, vol.32
, Issue.6
, pp. 490-491
-
-
Dalby, S.1
-
20
-
-
0022054168
-
The many faces of competency
-
Drane, J.F. 1985. The many faces of competency. Hastings Center Report 15(2): 17–21.
-
(1985)
Hastings Center Report
, vol.15
, Issue.2
, pp. 17-21
-
-
Drane, J.F.1
-
21
-
-
84881454881
-
The disclosure of incidental genomic findings: An “ethically important moment” in pediatric research and practice
-
Driessnack, M., S. Daack-Hirsch, et al. 2013. The disclosure of incidental genomic findings: An “ethically important moment” in pediatric research and practice. Journal of Community Genetics 4(4): 435–444.
-
(2013)
Journal of Community Genetics
, vol.4
, Issue.4
, pp. 435-444
-
-
Driessnack, M.1
Daack-Hirsch, S.2
-
22
-
-
84933188982
-
-
Driver, J. (2009) The history of utilitarianism. In The stanford encyclopedia of philosophy. Accessed 17 Nov 2014
-
Driver, J. (2009) The history of utilitarianism. In The stanford encyclopedia of philosophy. http://plato.stanford.edu/archives/sum2009/entries/utilitarianism-history/. Accessed 17 Nov 2014.
-
-
-
-
23
-
-
69549083158
-
Evaluating the utility of personal genomic information
-
Foster, M.W., J.J. Mulvihill, et al. 2009. Evaluating the utility of personal genomic information. Genetics in Medicine 11(8): 570–574.
-
(2009)
Genetics in Medicine
, vol.11
, Issue.8
, pp. 570-574
-
-
Foster, M.W.1
Mulvihill, J.J.2
-
24
-
-
84883856709
-
Description and pilot results from a novel method for evaluating return of incidental findings from next-generation sequencing technologies
-
Goddard, K.A., E.P. Whitlock, et al. 2013. Description and pilot results from a novel method for evaluating return of incidental findings from next-generation sequencing technologies. Genetics in Medicine 15: 721–728.
-
(2013)
Genetics in Medicine
, vol.15
, pp. 721-728
-
-
Goddard, K.A.1
Whitlock, E.P.2
-
25
-
-
84859577332
-
Exploring concordance and discordance for return of incidental findings from clinical sequencing
-
Green, R.C., J.S. Berg, et al. 2012. Exploring concordance and discordance for return of incidental findings from clinical sequencing. Genetics in Medicine 14(4): 405–410.
-
(2012)
Genetics in Medicine
, vol.14
, Issue.4
, pp. 405-410
-
-
Green, R.C.1
Berg, J.S.2
-
26
-
-
84880535720
-
ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing
-
Green, R.C., J.S. Berg, et al. 2013. ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genetics in Medicine 15(7): 565–574.
-
(2013)
Genetics in Medicine
, vol.15
, Issue.7
, pp. 565-574
-
-
Green, R.C.1
Berg, J.S.2
-
27
-
-
69549110336
-
Personal utility and genomic information: Look before you leap
-
Grosse, S.D., C.M. McBride, et al. 2009. Personal utility and genomic information: Look before you leap. Genetics in Medicine 11(8): 575–576.
-
(2009)
Genetics in Medicine
, vol.11
, Issue.8
, pp. 575-576
-
-
Grosse, S.D.1
McBride, C.M.2
-
28
-
-
33748164494
-
Recognizing tacit knowledge in medical epistemology
-
Henry, S.G. 2006. Recognizing tacit knowledge in medical epistemology. Theoretical Medicine and Bioethics 27(3): 187–213.
-
(2006)
Theoretical Medicine and Bioethics
, vol.27
, Issue.3
, pp. 187-213
-
-
Henry, S.G.1
-
29
-
-
84867376637
-
Personalized genomic medicine and the rhetoric of empowerment
-
Juengst, E.T., M.A. Flatt, et al. 2012. Personalized genomic medicine and the rhetoric of empowerment. Hastings Center Report 42(5): 34–40.
-
(2012)
Hastings Center Report
, vol.42
, Issue.5
, pp. 34-40
-
-
Juengst, E.T.1
Flatt, M.A.2
-
30
-
-
34247194258
-
Genetic information in the age of genohype
-
Kakuk, P. 2006. Genetic information in the age of genohype. Medicine, Health Care and Philosophy 9(3): 325–337.
-
(2006)
Medicine, Health Care and Philosophy
, vol.9
, Issue.3
, pp. 325-337
-
-
Kakuk, P.1
-
31
-
-
49749152465
-
Gene concepts and genethics: Beyond exceptionalism
-
Kakuk, P. 2008. Gene concepts and genethics: Beyond exceptionalism. Science and Engineering Ethics 14(3): 357–375.
-
(2008)
Science and Engineering Ethics
, vol.14
, Issue.3
, pp. 357-375
-
-
Kakuk, P.1
-
32
-
-
33745224969
-
Counseling psychology in the era of genetic testing: Considerations for practice, research, and training
-
Kaut, K.P. 2006. Counseling psychology in the era of genetic testing: Considerations for practice, research, and training. The Counseling Psychologist 34(4): 461–488.
-
(2006)
The Counseling Psychologist
, vol.34
, Issue.4
, pp. 461-488
-
-
Kaut, K.P.1
-
33
-
-
84921382128
-
-
Dynamic consent: A patient interface for twenty-first century research networks
-
Kaye, J., E. A. Whitley, et al. (2014). Dynamic consent: A patient interface for twenty-first century research networks. European Journal of Human Genetics. doi:10.1038/ejhg.2014.71.
-
(2014)
European Journal of Human Genetics
-
-
Kaye, J.1
Whitley, E.A.2
-
34
-
-
10644282182
-
Human genetic research: Emerging trends in ethics
-
Knoppers, B.M., and R. Chadwick. 2005. Human genetic research: Emerging trends in ethics. Nature Reviews Genetics 6(1): 75–79.
-
(2005)
Nature Reviews Genetics
, vol.6
, Issue.1
, pp. 75-79
-
-
Knoppers, B.M.1
Chadwick, R.2
-
35
-
-
84896711144
-
Returning pleiotropic results from genetic testing to patients and research participants
-
Kocarnik, J.M., and S.M. Fullerton. 2014. Returning pleiotropic results from genetic testing to patients and research participants. JAMA 311(8): 795–796.
-
(2014)
JAMA
, vol.311
, Issue.8
, pp. 795-796
-
-
Kocarnik, J.M.1
Fullerton, S.M.2
-
36
-
-
77955610460
-
Multidimensional results reporting to participants in genomic studies: Getting it right
-
Kohane, I.S., and P.L. Taylor. 2010. Multidimensional results reporting to participants in genomic studies: Getting it right. Science Translational Medicine 2(37): 37.
-
(2010)
Science Translational Medicine
, vol.2
, Issue.37
, pp. 37
-
-
Kohane, I.S.1
Taylor, P.L.2
-
37
-
-
0030103347
-
Reconceiving the family. The process of consent in medical decisionmaking
-
Kuczewski, M.G. 1996. Reconceiving the family. The process of consent in medical decisionmaking. Hastings Center Report 26(2): 30–37.
-
(1996)
Hastings Center Report
, vol.26
, Issue.2
, pp. 30-37
-
-
Kuczewski, M.G.1
-
40
-
-
77952708550
-
The behavioral response to personalized genetic information: Will genetic risk profiles motivate individuals and families to choose more healthful behaviors?
-
McBride, C.M., L.M. Koehly, et al. 2010. The behavioral response to personalized genetic information: Will genetic risk profiles motivate individuals and families to choose more healthful behaviors? Annual Review of Public Health 31: 89–103.
-
(2010)
Annual Review of Public Health
, vol.31
, pp. 89-103
-
-
McBride, C.M.1
Koehly, L.M.2
-
41
-
-
84875912503
-
The indispensable role of professional judgment in genomic medicine
-
McGuire, A.L., L.B. McCullough, et al. 2013. The indispensable role of professional judgment in genomic medicine. JAMA 309(14): 1465–1466.
-
(2013)
JAMA
, vol.309
, Issue.14
, pp. 1465-1466
-
-
McGuire, A.L.1
McCullough, L.B.2
-
42
-
-
77952032690
-
Consensus statement: Chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies
-
Miller, D., M. Adam, et al. 2010. Consensus statement: Chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies. American Journal of Human Genetics 86(5): 749–764.
-
(2010)
American Journal of Human Genetics
, vol.86
, Issue.5
, pp. 749-764
-
-
Miller, D.1
Adam, M.2
-
43
-
-
44949089705
-
Incidental findings in human subjects research: What do investigators owe research participants?
-
Miller, F.G., M.M. Mello, et al. 2008. Incidental findings in human subjects research: What do investigators owe research participants? The Journal of Law, Medicine and Ethics 36(2): 271–279.
-
(2008)
The Journal of Law, Medicine and Ethics
, vol.36
, Issue.2
, pp. 271-279
-
-
Miller, F.G.1
Mello, M.M.2
-
45
-
-
77957025340
-
Risk detection in individual health care: Any limits?
-
Palmboom, G., and D. Willems. 2010. Risk detection in individual health care: Any limits? Bioethics 24(8): 431–438.
-
(2010)
Bioethics
, vol.24
, Issue.8
, pp. 431-438
-
-
Palmboom, G.1
Willems, D.2
-
46
-
-
3242732814
-
Genetic information: A joint account?
-
Parker, M., and A. Lucassen. 2004. Genetic information: A joint account? British Medical Journal 329(7458): 165–167.
-
(2004)
British Medical Journal
, vol.329
, Issue.7458
, pp. 165-167
-
-
Parker, M.1
Lucassen, A.2
-
47
-
-
84896709604
-
The future in clinical genetics: Affective forecasting biases in patient and clinician decision making
-
Peters, S.A., S.M. Laham, et al. 2013. The future in clinical genetics: Affective forecasting biases in patient and clinician decision making. Clinical Genetics 85(4): 312–317.
-
(2013)
Clinical Genetics
, vol.85
, Issue.4
, pp. 312-317
-
-
Peters, S.A.1
Laham, S.M.2
-
48
-
-
84977773230
-
Anticipate and communicate: ethical management of incidental and secondary findings in the clinical
-
Presidential Commission for the Study of Bioethical Issues. (2013). Anticipate and communicate: ethical management of incidental and secondary findings in the clinical, research and direct-to-consumer contexts. http://bioethics.gov/sites/default/files/FINALAnticipateCommunicate_PCSBI_0.pdf. Accessed 9 July 2014.
-
(2013)
Research and direct-to-consumer contexts
-
-
-
50
-
-
0023543165
-
Family illness paradigms: Evolution and significance
-
Rolland, J.S. 1987. Family illness paradigms: Evolution and significance. Family Systems Medicine 5(4): 482–502.
-
(1987)
Family Systems Medicine
, vol.5
, Issue.4
, pp. 482-502
-
-
Rolland, J.S.1
-
51
-
-
16244422307
-
Toward a biopsychosocial model for 21st-century genetics
-
Rolland, J.S., and J.K. Williams. 2005. Toward a biopsychosocial model for 21st-century genetics. Family Process 44(1): 3–24.
-
(2005)
Family Process
, vol.44
, Issue.1
, pp. 3-24
-
-
Rolland, J.S.1
Williams, J.K.2
-
52
-
-
26844559961
-
How can the evaluation of genetic tests be enhanced? Lessons learned from the ACCE framework and evaluating genetic tests in the United Kingdom
-
Sanderson, S., R. Zimmern, et al. 2005. How can the evaluation of genetic tests be enhanced? Lessons learned from the ACCE framework and evaluating genetic tests in the United Kingdom. Genetics in Medicine 7(7): 495–500.
-
(2005)
Genetics in Medicine
, vol.7
, Issue.7
, pp. 495-500
-
-
Sanderson, S.1
Zimmern, R.2
-
53
-
-
33947319484
-
You don’t make genetic test decisions from one day to the next—Using time to preserve moral space
-
Scully, J.L., R. Porz, et al. 2007. You don’t make genetic test decisions from one day to the next—Using time to preserve moral space. Bioethics 21(4): 208–217.
-
(2007)
Bioethics
, vol.21
, Issue.4
, pp. 208-217
-
-
Scully, J.L.1
Porz, R.2
-
54
-
-
33751254915
-
Predicting preferences: A neglected aspect of shared decision-making
-
Sevdalis, N., and N. Harvey. 2006. Predicting preferences: A neglected aspect of shared decision-making. Health Expectations 9(3): 245–251.
-
(2006)
Health Expectations
, vol.9
, Issue.3
, pp. 245-251
-
-
Sevdalis, N.1
Harvey, N.2
-
55
-
-
0034120841
-
Psychological model for presymptomatic test interviews: Lessons learned from Huntington Disease
-
Soldan, J., E. Street, et al. 2000. Psychological model for presymptomatic test interviews: Lessons learned from Huntington Disease. Journal of Genetic Counseling 9(1): 15–31.
-
(2000)
Journal of Genetic Counseling
, vol.9
, Issue.1
, pp. 15-31
-
-
Soldan, J.1
Street, E.2
-
56
-
-
84896743548
-
Incidentalomas in genomics and radiology
-
Solomon, B.D. 2014. Incidentalomas in genomics and radiology. New England Journal of Medicine 370(11): 988–990.
-
(2014)
New England Journal of Medicine
, vol.370
, Issue.11
, pp. 988-990
-
-
Solomon, B.D.1
-
58
-
-
0032087287
-
Value neutrality and nondirectiveness: Comments on “Future directions in genetic counseling
-
Suter, S.M. 1998. Value neutrality and nondirectiveness: Comments on “Future directions in genetic counseling”. Kennedy Institute of Ethics Journal 8(2): 161–163.
-
(1998)
Kennedy Institute of Ethics Journal
, vol.8
, Issue.2
, pp. 161-163
-
-
Suter, S.M.1
-
59
-
-
84866491890
-
I want to know what’s in Pandora’s box”: Comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing
-
Townsend, A., S. Adam, et al. 2012. “I want to know what’s in Pandora’s box”: Comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing. American Journal of Medical Genetics Part A 158A(10): 2519–2525.
-
(2012)
American Journal of Medical Genetics Part A
, vol.158A
, Issue.10
, pp. 2519-2525
-
-
Townsend, A.1
Adam, S.2
-
61
-
-
0029257560
-
Patient autonomy and value-neutrality in nondirective genetic counseling
-
Wachbroit, R., and D. Wasserman. 1995. Patient autonomy and value-neutrality in nondirective genetic counseling. Stanford Law and Policy Review 6(2): 103–111.
-
(1995)
Stanford Law and Policy Review
, vol.6
, Issue.2
, pp. 103-111
-
-
Wachbroit, R.1
Wasserman, D.2
-
62
-
-
0242317706
-
Family resilience: A framework for clinical practice
-
Walsh, F. 2003. Family resilience: A framework for clinical practice. Family Process 42(1): 1–18.
-
(2003)
Family Process
, vol.42
, Issue.1
-
-
Walsh, F.1
-
63
-
-
70449622970
-
Between the individual and the community: The impact of genetics on ethical models
-
Widdows, A. 2009. Between the individual and the community: The impact of genetics on ethical models. New Genetics and Society 28(2): 173–188.
-
(2009)
New Genetics and Society
, vol.28
, Issue.2
, pp. 173-188
-
-
Widdows, A.1
-
64
-
-
44949123795
-
Introduction: The challenge of incidental findings
-
Wolf, S.M. 2008. Introduction: The challenge of incidental findings. The Journal of Law, Medicine and Ethics 36(2): 216–218.
-
(2008)
The Journal of Law, Medicine and Ethics
, vol.36
, Issue.2
, pp. 216-218
-
-
Wolf, S.M.1
-
65
-
-
44949211505
-
Managing incidental findings in human subjects research: Analysis and recommendations
-
Wolf, S.M., F.P. Lawrenz, et al. 2008. Managing incidental findings in human subjects research: Analysis and recommendations. The Journal of Law, Medicine and Ethics 36(2): 219–248.
-
(2008)
The Journal of law, Medicine and Ethics
, vol.36
, Issue.2
, pp. 219-248
-
-
Wolf, S.M.1
Lawrenz, F.P.2
-
66
-
-
79251645624
-
Making a definitive diagnosis: Successful clinical application of whole exome sequencing in a child with intractable inflammatory bowel disease
-
Worthey, E.A., A.N. Mayer, et al. 2011. Making a definitive diagnosis: Successful clinical application of whole exome sequencing in a child with intractable inflammatory bowel disease. Genetics in Medicine 13(3): 255–262.
-
(2011)
Genetics in Medicine
, vol.13
, Issue.3
, pp. 255-262
-
-
Worthey, E.A.1
Mayer, A.N.2
|