-
1
-
-
84906435376
-
-
Advisory Committee on Heritable Disorders in Newborns and Children, Health Resources and Services Administration. September 25, Bethesda, Md
-
Advisory Committee on Heritable Disorders in Newborns and Children. 2009. Transcript of nineteenth meeting. Department of Health and Human Services, Health Resources and Services Administration. September 25, Bethesda, Md.
-
(2009)
Transcript of Nineteenth Meeting. Department of Health and Human Services
-
-
-
2
-
-
0033051553
-
The disability paradox: A high quality of life against all odds
-
Albrecht, G. L., and P. J. Devlieger. 1999. "The Disability Paradox: A High Quality of Life against All Odds." Social Science and Medicine 48:977-988.
-
(1999)
Social Science and Medicine
, vol.48
, pp. 977-988
-
-
Albrecht, G.L.1
Devlieger, P.J.2
-
4
-
-
33744830065
-
A vision of the future of newborn screening
-
Alexander, D., and P. van Dyck. 2006. "A Vision of the Future of Newborn Screening." Pediatrics 117:S350-S354.
-
(2006)
Pediatrics
, vol.117
-
-
Alexander, D.1
Van Dyck, P.2
-
5
-
-
33947120112
-
Neonatal screening: Old dogma or sound principle?: In reply
-
-. 2007. "Neonatal Screening: Old Dogma or Sound Principle?: In Reply." Pediatrics 119:407.
-
(2007)
Pediatrics
, vol.119
, pp. 407
-
-
Alexander, D.1
Van Dyck, P.2
-
7
-
-
0025251947
-
Attitudes of parents of cystic fibrosis children towards neonatal screening and antenatal diagnosis
-
Al-Jader, L. N., M. C. Goodchild, H. C. Ryley, and P. S. Harper. 1990. "Attitudes of Parents of Cystic Fibrosis Children towards Neonatal Screening and Antenatal Diagnosis." Clinical Genetics 38:460-465.
-
(1990)
Clinical Genetics
, vol.38
, pp. 460-465
-
-
Al-Jader, L.N.1
Goodchild, M.C.2
Ryley, H.C.3
Harper, P.S.4
-
8
-
-
0001373172
-
Serving the family from birth to the medical home: Newborn screening; a blueprint for the future. A call for a national agenda on state newborn screening programs
-
American Academy of Pediatrics AAP
-
American Academy of Pediatrics [AAP]. 2000. "Serving the Family from Birth to the Medical Home: Newborn Screening; A Blueprint for the Future. A Call for a National Agenda on State Newborn Screening Programs." Pediatrics 106:389-427.
-
(2000)
Pediatrics
, vol.106
, pp. 389-427
-
-
Al-Jader, L.N.1
Goodchild, M.C.2
Ryley, H.C.3
Harper, P.S.4
-
9
-
-
27744550646
-
Newborn screening: Toward a uniform screening panel and system
-
American College of Medical Genetics ACMG
-
American College of Medical Genetics [ACMG]. 2005. "Newborn Screening: Toward a Uniform Screening Panel and System." Federal Register 70 (44). Maternal and Child Health Bureau, http://mchb.hrsa.gov/screening/.
-
(2005)
Federal Register
, vol.70
, Issue.44
-
-
Al-Jader, L.N.1
Goodchild, M.C.2
Ryley, H.C.3
Harper, P.S.4
-
10
-
-
0034531836
-
Tandem mass spectrometry in newborn screening
-
American College of Medical Genetics/American Society of Human Genetics Test and Technology Transfer Committee Working Group ACMG/ASHG
-
American College of Medical Genetics/American Society of Human Genetics Test and Technology Transfer Committee Working Group [ACMG/ASHG]. 2000. "Tandem Mass Spectrometry in Newborn Screening." Genetics 2:267-269.
-
(2000)
Genetics
, vol.2
, pp. 267-269
-
-
Al-Jader, L.N.1
Goodchild, M.C.2
Ryley, H.C.3
Harper, P.S.4
-
11
-
-
0141794232
-
ACOG committee opinion number 287, October 2003: Newborn screening
-
American College of Obstetricians and Gynecologists ACOG
-
American College of Obstetricians and Gynecologists [ACOG]. 2003. "ACOG Committee Opinion Number 287, October 2003: Newborn Screening." Obstetrics and Gynecology 102:887-889.
-
(2003)
Obstetrics and Gynecology
, vol.102
, pp. 887-889
-
-
Al-Jader, L.N.1
Goodchild, M.C.2
Ryley, H.C.3
Harper, P.S.4
-
13
-
-
0028872836
-
Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents
-
American Society of Human Genetics and American College of Medical Genetics ASHG/ACMG
-
American Society of Human Genetics and American College of Medical Genetics [ASHG/ACMG]. 1995. "Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents." American Journal of Human Genetics 57:1233-1241.
-
(1995)
American Journal of Human Genetics
, vol.57
, pp. 1233-1241
-
-
Al-Jader, L.N.1
Goodchild, M.C.2
Ryley, H.C.3
Harper, P.S.4
-
14
-
-
0028872836
-
Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents
-
-. 2005. "Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents." American Journal of Human Genetics 57:1233-1241.
-
(2005)
American Journal of Human Genetics
, vol.57
, pp. 1233-1241
-
-
-
15
-
-
0003987981
-
-
Washington, D. C.: National Academy Press
-
Andrews, L. B., J. E. Fullerton, N. A. Hotzman, and A. Motolsky. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, D. C.: National Academy Press.
-
(1994)
Assessing Genetic Risks: Implications for Health and Social Policy
-
-
Andrews, L.B.1
Fullerton, J.E.2
Hotzman, N.A.3
Motolsky, A.4
-
16
-
-
0020387009
-
Mandatory PKU screening: The other side of the looking glass
-
Annas, G. 1982. "Mandatory PKU Screening: The Other Side of the Looking Glass." American Journal of Public Health 72:137-160.
-
(1982)
American Journal of Public Health
, vol.72
, pp. 137-160
-
-
Annas, G.1
-
18
-
-
33749064369
-
Whose deaths matter? Mortality, advocacy, and attention to disease in the mass media
-
Armstrong, E., D. Carpenter, and M. Hojnacki. 2006. "Whose Deaths Matter? Mortality, Advocacy, and Attention to Disease in the Mass Media." Journal of Health Politics, Policy, and Law 31:729-772.
-
(2006)
Journal of Health Politics, Policy, and Law
, vol.31
, pp. 729-772
-
-
Armstrong, E.1
Carpenter, D.2
Hojnacki, M.3
-
19
-
-
33947326873
-
Newborn screening: Current status
-
Arn, P. 2007. "Newborn Screening: Current Status." Health Affairs 26:559-566.
-
(2007)
Health Affairs
, vol.26
, pp. 559-566
-
-
Arn, P.1
-
20
-
-
66849121866
-
The converged experience of risk and disease
-
Aronowitz, R. 2009. "The Converged Experience of Risk and Disease." Milbank Quarterly 87:417-442.
-
(2009)
Milbank Quarterly
, vol.87
, pp. 417-442
-
-
Aronowitz, R.1
-
21
-
-
0035674957
-
A public health response to emerging technology: Expansion of the massachusetts newborn screening program
-
Atkinson, K., B. Zuckerman, J. Sharfstein, D. Levin, R. Blatt, and H. Koh. 2001. "A Public Health Response to Emerging Technology: Expansion of the Massachusetts Newborn Screening Program." Public Health Report 116:122-131.
-
(2001)
Public Health Report
, vol.116
, pp. 122-131
-
-
Atkinson, K.1
Zuckerman, B.2
Sharfstein, J.3
Levin, D.4
Blatt, R.5
Koh, H.6
-
23
-
-
0033857066
-
SPIKES-A six-step protocol for delivering bad news: Application to the patient with cancer
-
Baile, W. F., R. Buckman, R. Lenzi, G. Glober, E. A. Beale, and A. P. Kudelka. 2000. "SPIKES-A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer." Oncologist 5:302-311.
-
(2000)
Oncologist
, vol.5
, pp. 302-311
-
-
Baile, W.F.1
Buckman, R.2
Lenzi, R.3
Glober, G.4
Beale, E.A.5
Kudelka, A.P.6
-
25
-
-
33846003153
-
Changing perspectives on the benefits of newborn screening
-
Bailey, D. B., Jr., L. M. Beskow, A. M. Davis, and D. Skinner. 2006. "Changing Perspectives on the Benefits of Newborn Screening." Mental Retardation and Developmental Disabilities Research Reviews 12:270-279.
-
(2006)
Mental Retardation and Developmental Disabilities Research Reviews
, vol.12
, pp. 270-279
-
-
Bailey Jr., D.B.1
Beskow, L.M.2
Davis, A.M.3
Skinner, D.4
-
26
-
-
27644437938
-
Newborn screening for developmental disabilities: Reframing presumptive benefit
-
Bailey, D. B., D. Skinner, and S. F. Warren. 2005. "Newborn Screening for Developmental Disabilities: Reframing Presumptive Benefit." American Journal of Public Health 95:1889-1893.
-
(2005)
American Journal of Public Health
, vol.95
, pp. 1889-1893
-
-
Bailey, D.B.1
Skinner, D.2
Warren, S.F.3
-
27
-
-
44849114298
-
Ethics, evidence, and cost in newborn screening
-
Baily, M. A., and T. Murray. 2008. "Ethics, Evidence, and Cost in Newborn Screening." Hastings Center Report 38:23-31.
-
(2008)
Hastings Center Report
, vol.38
, pp. 23-31
-
-
Baily, M.A.1
Murray, T.2
-
28
-
-
15944409253
-
Maternal efforts to prevent type 1 diabetes in at-risk children
-
Baughcum, A. E., S. B. Johnson, S. K. Carmichael, A. B. Lewin, J. X. She, and D. A. Schatz. 2005. "Maternal Efforts to Prevent Type 1 Diabetes in At-Risk Children. " Diabetes Care 28:916-921.
-
(2005)
Diabetes Care
, vol.28
, pp. 916-921
-
-
Baughcum, A.E.1
Johnson, S.B.2
Carmichael, S.K.3
Lewin, A.B.4
She, J.X.5
Schatz, D.A.6
-
30
-
-
2442625386
-
Cystic fibrosis and the family: A review and critique of the literature
-
Berge, J. M., and J. M. Patterson. 2004. "Cystic Fibrosis and the Family: A Review and Critique of the Literature." Families, Systems, and Health 22:74-100.
-
(2004)
Families, Systems, and Health
, vol.22
, pp. 74-100
-
-
Berge, J.M.1
Patterson, J.M.2
-
32
-
-
34347259963
-
Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed
-
Bluebond-Langer, M., J. B. Belasco, A. Goldman, and C. Belasco. 2007. "Understanding Parents' Approaches to Care and Treatment of Children with Cancer when Standard Therapy Has Failed." Journal of Clinical Oncology 25:2414-2419.
-
(2007)
Journal of Clinical Oncology
, vol.25
, pp. 2414-2419
-
-
Bluebond-Langer, M.1
Belasco, J.B.2
Goldman, A.3
Belasco, C.4
-
33
-
-
0025077326
-
Effects of newborn screening of cystic fibrosis on reported maternal behaviour
-
Boland, C., and N. L. Thompson. 1990. "Effects of Newborn Screening of Cystic Fibrosis on Reported Maternal Behaviour." Archives of Disease in Childhood 65:1240-1244.
-
(1990)
Archives of Disease in Childhood
, vol.65
, pp. 1240-1244
-
-
Boland, C.1
Thompson, N.L.2
-
36
-
-
0038187336
-
Irony, ethnography, and informed consent
-
ed. B. Hoffmaster, Philadelphia: Temple University Press
-
Bosk, C. L. 2001. "Irony, Ethnography, and Informed Consent." In Bioethics in Social Context, ed. B. Hoffmaster, 199-221. Philadelphia: Temple University Press.
-
(2001)
Bioethics in Social Context
, pp. 199-221
-
-
Bosk, C.L.1
-
37
-
-
33644692103
-
Research for newborn screening: Developing a national framework
-
Botkin, J. R. 2005. "Research for Newborn Screening: Developing a National Framework." Pediatrics 116:862-871.
-
(2005)
Pediatrics
, vol.116
, pp. 862-871
-
-
Botkin, J.R.1
-
38
-
-
79951784730
-
Parental permission for research in newborn screening
-
ed. M. A. Baily and T. H. Murray, Baltimore: Johns Hopkins University Press
-
-. 2009. "Parental Permission for Research in Newborn Screening." In Ethics and Newborn Genetic Screening: New Technologies, New Challenges, ed. M. A. Baily and T. H. Murray, 255-273. Baltimore: Johns Hopkins University Press.
-
(2009)
Ethics and Newborn Genetic Screening: New Technologies, New Challenges
, pp. 255-273
-
-
Botkin, J.R.1
-
39
-
-
33646853843
-
Newborn screening technology: Proceed with caution
-
Botkin, J. R., E. W. Clayton, N. Fost, W. Burke, T. Murray, M. A. Baily, B. Wilfond, A. Berg, and L. F. Ross. 2006. "Newborn Screening Technology: Proceed with Caution. " Pediatrics 117:1793-1799.
-
(2006)
Pediatrics
, vol.117
, pp. 1793-1799
-
-
Botkin, J.R.1
Clayton, E.W.2
Fost, N.3
Burke, W.4
Murray, T.5
Baily, M.A.6
Wilfond, B.7
Berg, A.8
Ross, L.F.9
-
40
-
-
0041985446
-
General practice and new genetics: What do general practitioners know about community carrier screening for cystic fibrosis?
-
Boulton, M., and R. Williamson. 1995. "General Practice and New Genetics: What Do General Practitioners Know about Community Carrier Screening for Cystic Fibrosis?" Public Understanding of Science 4:255-267.
-
(1995)
Public Understanding of Science
, vol.4
, pp. 255-267
-
-
Boulton, M.1
Williamson, R.2
-
42
-
-
77649113698
-
The lure of treatment: Expanded newborn screening and the curious case of histidinemia
-
Brosco, J. P., L. M. Sanders, R. Dharia, G. Guez, and C. Feudtner. 2010. "The Lure of Treatment: Expanded Newborn Screening and the Curious Case of Histidinemia." Pediatrics 125:417-419.
-
(2010)
Pediatrics
, vol.125
, pp. 417-419
-
-
Brosco, J.P.1
Sanders, L.M.2
Dharia, R.3
Guez, G.4
Feudtner, C.5
-
43
-
-
84906447217
-
Early history of universal screening for PKU and galactosemia in the U. S
-
January-March
-
Brosco, J., M. Seider, and A. Dunn. 2006. "Early History of Universal Screening for PKU and Galactosemia in the U. S." Mailman Center for Child Development, Department of Pediatrics, University of Miami, Quarterly Narrative Report, January-March.
-
(2006)
Mailman Center for Child Development, Department of Pediatrics, University of Miami, Quarterly Narrative Report
-
-
Brosco, J.1
Seider, M.2
Dunn, A.3
-
44
-
-
33747135641
-
'A lab of our own': Environmental causation of breast cancer and challenges to the dominant epidemiological paradigm
-
Brown, P., S. McCormick, B. Mayer, S. Zavestoski, R. Morello-Frosch, G. Altman, and L. Senier. 2006. "'A Lab of Our Own': Environmental Causation of Breast Cancer and Challenges to the Dominant Epidemiological Paradigm." Science, Technology, and Human Values 31:499-536.
-
(2006)
Science, Technology, and Human Values
, vol.31
, pp. 499-536
-
-
Brown, P.1
McCormick, S.2
Mayer, B.3
Zavestoski, S.4
Morello-Frosch, R.5
Altman, G.6
Senier, L.7
-
45
-
-
77954101543
-
Committee report: Method for evaluating conditions nominated for population-based screening of newborns and children
-
Calonge, N., N. S. Green, P. Rinaldo, M. Lloyd-Puryear, D. Dougherty, C. Boyle, M. Watson, T. Trotter, S. F. Terry, and R. R. Howell. 2010. "Committee Report: Method for Evaluating Conditions Nominated for Population-Based Screening of Newborns and Children. " Genetics in Medicine 12:153-159.
-
(2010)
Genetics in Medicine
, vol.12
, pp. 153-159
-
-
Calonge, N.1
Green, N.S.2
Rinaldo, P.3
Lloyd-Puryear, M.4
Dougherty, D.5
Boyle, C.6
Watson, M.7
Trotter, T.8
Terry, S.F.9
Howell, R.R.10
-
50
-
-
0036232488
-
Citizen participation in health decision-making: Past experience, future prospects
-
Church, J., D. Saunders, M. Wanke, R. Pong, C. Spooner, and M. Dorgan. 2002. "Citizen Participation in Health Decision-Making: Past Experience, Future Prospects." Journal of Public Health Policy 23:12-32.
-
(2002)
Journal of Public Health Policy
, vol.23
, pp. 12-32
-
-
Church, J.1
Saunders, D.2
Wanke, M.3
Pong, R.4
Spooner, C.5
Dorgan, M.6
-
51
-
-
0026730958
-
Issues in state newborn screening programs
-
Clayton, E. W. 1992a. "Issues in State Newborn Screening Programs." Pediatrics 90:641-646.
-
(1992)
Pediatrics
, vol.90
, pp. 641-646
-
-
Clayton, E.W.1
-
52
-
-
0026840242
-
Symposium: Legal and ethical issues raised by human genome project, screening and treatment of newborns
-
-. 1992b. "Symposium: Legal and Ethical Issues Raised by Human Genome Project, Screening and Treatment of Newborns." Houston Law Review 29:85-148.
-
(1992)
Houston Law Review
, vol.29
, pp. 85-148
-
-
Clayton, E.W.1
-
53
-
-
0029058380
-
Removing the shadow of the law from the debate about genetic testing of children
-
-. 1995. "Removing the Shadow of the Law from the Debate about Genetic Testing of Children. " American Journal of Medical Genetics 57:630-634.
-
(1995)
American Journal of Medical Genetics
, vol.57
, pp. 630-634
-
-
Clayton, E.W.1
-
54
-
-
25844514754
-
Talking with parents before newborn screening
-
-. 2005. "Talking with Parents before Newborn Screening." Journal of Pediatrics 147:S26-S29.
-
(2005)
Journal of Pediatrics
, vol.147
-
-
Clayton, E.W.1
-
55
-
-
77957223374
-
Lessons to be learned from the move toward expanded newborn screening
-
ed. M. A. Baily and T. H. Murray, Baltimore: Johns Hopkins University Press
-
-. 2009a. "Lessons to Be Learned from the Move toward Expanded Newborn Screening." In Ethics and Newborn Genetic Screening: New Technologies, New Challenges, ed. M. A. Baily and T. H. Murray, 125-135. Baltimore: Johns Hopkins University Press.
-
(2009)
Ethics and Newborn Genetic Screening: New Technologies, New Challenges
, pp. 125-135
-
-
Clayton, E.W.1
-
56
-
-
67649405018
-
Ten fingers, ten toes: Newborn screening for untreatable disorders
-
-. 2009b. "Ten Fingers, Ten Toes: Newborn Screening for Untreatable Disorders." Health Matrix Cleveland 19:199-203.
-
(2009)
Health Matrix Cleveland
, vol.19
, pp. 199-203
-
-
Clayton, E.W.1
-
58
-
-
0037464588
-
A vision for the future of genomics research: A blueprint for the genomics era
-
Collins F. S., E. D. Green, A. E. Guttmacher, and M. S. Guyer. 2003. "A Vision for the Future of Genomics Research: A Blueprint for the Genomics Era." Nature 422:835-847.
-
(2003)
Nature
, vol.422
, pp. 835-847
-
-
Collins, F.S.1
Green, E.D.2
Guttmacher, A.E.3
Guyer, M.S.4
-
59
-
-
84906436143
-
Vaccination and parents' rights
-
ed. H. Collins and T. Pinch, Chicago: University of Chicago Press
-
Collins, H., and T. Pinch. 2005. "Vaccination and Parents' Rights." In Dr. Golem: How to Think about Medicine, ed. H. Collins and T. Pinch, 180-205. Chicago: University of Chicago Press.
-
(2005)
Dr. Golem: How to Think About Medicine
, pp. 180-205
-
-
Collins, H.1
Pinch, T.2
-
60
-
-
0042782543
-
Parents' experiences with genetic counseling after the birth of a baby with a genetic disorder: An exploratory study
-
Collins, V., J. Halliday, S. Kahler, and R. Williamson. 2001. "Parents' Experiences with Genetic Counseling after the Birth of a Baby with a Genetic Disorder: An Exploratory Study." Journal of Genetic Counseling 10:53-72.
-
(2001)
Journal of Genetic Counseling
, vol.10
, pp. 53-72
-
-
Collins, V.1
Halliday, J.2
Kahler, S.3
Williamson, R.4
-
62
-
-
0009095492
-
Public eyes and private genes: Historical frames, new constructions, and social problems
-
Conrad, P. 1997. "Public Eyes and Private Genes: Historical Frames, New Constructions, and Social Problems." Social Problems 44:139-154.
-
(1997)
Social Problems
, vol.44
, pp. 139-154
-
-
Conrad, P.1
-
63
-
-
0347243949
-
Media images, genetics, and culture
-
ed. B. Hoffmaster, Philadelphia: Temple University Press
-
-. 2001. "Media Images, Genetics, and Culture." In Bioethics in Social Context, ed. B. Hoffmaster, 90-111. Philadelphia: Temple University Press.
-
(2001)
Bioethics in Social Context
, pp. 90-111
-
-
Conrad, P.1
-
65
-
-
34247732721
-
Grounded theory research: Procedures, canons, and evaluative criteria
-
Corbin, J., and A. Strauss. 1990. "Grounded Theory Research: Procedures, Canons, and Evaluative Criteria." Qualitative Sociology 13:3-21.
-
(1990)
Qualitative Sociology
, vol.13
, pp. 3-21
-
-
Corbin, J.1
Strauss, A.2
-
67
-
-
0037018503
-
The science and politics of screening newborns
-
Cunningham, G. 2002. "The Science and Politics of Screening Newborns." New England Journal of Medicine 346:1084-1085.
-
(2002)
New England Journal of Medicine
, vol.346
, pp. 1084-1085
-
-
Cunningham, G.1
-
68
-
-
0039755927
-
The social context of the new genetics
-
ed. G. L. Albrecht, R. Fitzpatrick, and S. C. Scrimshaw, London: Sage Publications
-
Cunningham-Burley, S., and M. Bouton. 2000. "The Social Context of the New Genetics." In Handbook of Social Studies in Health and Medicine, ed. G. L. Albrecht, R. Fitzpatrick, and S. C. Scrimshaw, 173-188. London: Sage Publications.
-
(2000)
Handbook of Social Studies in Health and Medicine
, pp. 173-188
-
-
Cunningham-Burley, S.1
Bouton, M.2
-
69
-
-
79960528098
-
An advocate's perspective on newborn screening policy
-
ed. M. A. Baily and T. H. Murray, Baltimore: Johns Hopkins University Press
-
De Mars Cody, J. 2009. "An Advocate's Perspective on Newborn Screening Policy." In Ethics and Newborn Genetic Screening: New Technologies, New Challenges, ed. M. A. Baily and T. H. Murray, 89-105. Baltimore: Johns Hopkins University Press.
-
(2009)
Ethics and Newborn Genetic Screening: New Technologies, New Challenges
, pp. 89-105
-
-
De Mars Cody, J.1
-
70
-
-
84905153502
-
Parent advocacy in FAS public policy change
-
ed. A. Steissguth and J. Kanter, Seattle: University of Washington Press
-
DeVries, J., and A. Waller. 1997. "Parent Advocacy in FAS Public Policy Change." In Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities, ed. A. Steissguth and J. Kanter, 171-180. Seattle: University of Washington Press.
-
(1997)
Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities
, pp. 171-180
-
-
DeVries, J.1
Waller, A.2
-
71
-
-
18144427007
-
Parental altruism and the value of avoiding acute illness: Are kids worth more than parents?
-
Dickie, M., and V. L. Messman. 2004. "Parental Altruism and the Value of Avoiding Acute Illness: Are Kids Worth More Than Parents?" Journal of Environmental Economics and Management 48:1146-1174.
-
(2004)
Journal of Environmental Economics and Management
, vol.48
, pp. 1146-1174
-
-
Dickie, M.1
Messman, V.L.2
-
75
-
-
84906458719
-
The genetics of complex traits: What are the implications of education?
-
Public Health Genetics/Genomics Certificate Program, June 7
-
Dougherty, M. 2010. "The Genetics of Complex Traits: What Are the Implications of Education?" Paper presented at Sarah Lawrence College, Public Health Genetics/Genomics Certificate Program, June 7.
-
(2010)
Sarah Lawrence College
-
-
Dougherty, M.1
-
76
-
-
0035552674
-
Genetic and metabolic screening of newborns: Must health care providers seek explicit parental consent?
-
Downie, J., and S. Wildeman. 2001. "Genetic and Metabolic Screening of Newborns: Must Health Care Providers Seek Explicit Parental Consent?" Health Law Journal 9:61-100.
-
(2001)
Health Law Journal
, vol.9
, pp. 61-100
-
-
Downie, J.1
Wildeman, S.2
-
77
-
-
79961218319
-
Up and down with ecology: The 'issue attention' cycle
-
Downs, A. 1972. "Up and Down with Ecology: The 'Issue Attention' Cycle." Public Interest 28:38-50.
-
(1972)
Public Interest
, vol.28
, pp. 38-50
-
-
Downs, A.1
-
78
-
-
84906478545
-
A sociologist confronts 'the messy stuff'
-
October 18
-
Dreifus, C. 2005. "A Sociologist Confronts 'the Messy Stuff.'" New York Times. October 18.
-
(2005)
New York Times
-
-
Dreifus, C.1
-
79
-
-
0032601588
-
Public advocacy and allocation of federal funds for biomedical research
-
Dresser, R. 1999. "Public Advocacy and Allocation of Federal Funds for Biomedical Research." Milbank Quarterly 77:257-274.
-
(1999)
Milbank Quarterly
, vol.77
, pp. 257-274
-
-
Dresser, R.1
-
80
-
-
41349098603
-
Psychosocial aspects of newborn screening programs for cystic fibrosis
-
Duff, A., and K. Brownlee. 2008. "Psychosocial Aspects of Newborn Screening Programs for Cystic Fibrosis." Children's Health Care 37:21-37.
-
(2008)
Children's Health Care
, vol.37
, pp. 21-37
-
-
Duff, A.1
Brownlee, K.2
-
81
-
-
25144449774
-
Cystic fibrosis birth rates in Canada: A decreasing trend since the onset of genetic testing
-
Dupuis, A., D. Hamilton, D. E. Cole, and M. Corey. 2005. "Cystic Fibrosis Birth Rates in Canada: A Decreasing Trend since the Onset of Genetic Testing." Journal of Pediatrics 147:312-315.
-
(2005)
Journal of Pediatrics
, vol.147
, pp. 312-315
-
-
Dupuis, A.1
Hamilton, D.2
Cole, D.E.3
Corey, M.4
-
83
-
-
35048886973
-
In turnabout, infant deaths climb in south
-
April 22
-
Eckholm, E. 2007. "In Turnabout, Infant Deaths Climb in South." New York Times. April 22.
-
(2007)
New York Times
-
-
Eckholm, E.1
-
86
-
-
67349236628
-
Implementation of European standards of care for cystic fibrosis-control and treatment of infection
-
Elborn, J. S., M. Hodson, and C. Bertram. 2009. "Implementation of European Standards of Care for Cystic Fibrosis-Control and Treatment of Infection. " Journal of Cystic Fibrosis 8:211-217.
-
(2009)
Journal of Cystic Fibrosis
, vol.8
, pp. 211-217
-
-
Elborn, J.S.1
Hodson, M.2
Bertram, C.3
-
87
-
-
0029367785
-
The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials
-
Epstein, S. 1995. "The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials." Science, Technology, and Human Values 20:408-437.
-
(1995)
Science, Technology, and Human Values
, vol.20
, pp. 408-437
-
-
Epstein, S.1
-
88
-
-
0344233251
-
Newborn screening for cystic fibrosis: Ensuring more good than harm
-
Farrell, M. H., and P. M. Farrell. 2003. "Newborn Screening for Cystic Fibrosis: Ensuring More Good than Harm." Journal of Pediatrics 143:707-712.
-
(2003)
Journal of Pediatrics
, vol.143
, pp. 707-712
-
-
Farrell, M.H.1
Farrell, P.M.2
-
89
-
-
17744372496
-
Early diagnosis of cystic fibrosis through neonatal screening prevents severe malnutrition and improves long-term growth
-
the Wisconsin Cystic Fibrosis Neonatal Screening Study Group
-
Farrell, P. M., M. R. Kosorok, M. J. Rock, A. Laxova, L. Zeng, H. Lai, G. Hoffman, R. H. Laessig, M. L. Splaingard, and the Wisconsin Cystic Fibrosis Neonatal Screening Study Group. 2001. "Early Diagnosis of Cystic Fibrosis through Neonatal Screening Prevents Severe Malnutrition and Improves Long-Term Growth." Pediatrics 107:1-13.
-
(2001)
Pediatrics
, vol.107
, pp. 1-13
-
-
Farrell, P.M.1
Kosorok, M.R.2
Rock, M.J.3
Laxova, A.4
Zeng, L.5
Lai, H.6
Hoffman, G.7
Laessig, R.H.8
Splaingard, M.L.9
-
90
-
-
29544434529
-
The newborn screening educational gap: What prenatal care providers do compared with what is expected
-
Faulkner, L. A., L. B. Feuchtbaum, S. Graham, J. P. Bolstad, and G. C. Cunningham. 2006. "The Newborn Screening Educational Gap: What Prenatal Care Providers Do Compared with What Is Expected." American Journal of Obstetrics and Gynecology 194:131-137.
-
(2006)
American Journal of Obstetrics and Gynecology
, vol.194
, pp. 131-137
-
-
Faulkner, L.A.1
Feuchtbaum, L.B.2
Graham, S.3
Bolstad, J.P.4
Cunningham, G.C.5
-
91
-
-
34247326513
-
Maternal postpartum behavior and the emergence of infant-mother and infant-father synchrony in preterm and full-term infants: The role of neonatal vagal tone
-
Feldman, R., and A. I. Eidelman. 2007. "Maternal Postpartum Behavior and the Emergence of Infant-Mother and Infant-Father Synchrony in Preterm and Full-Term Infants: The Role of Neonatal Vagal Tone." Developmental Psychobiology 49:290-302.
-
(2007)
Developmental Psychobiology
, vol.49
, pp. 290-302
-
-
Feldman, R.1
Eidelman, A.I.2
-
94
-
-
0002683951
-
Medical uncertainty revisited
-
ed. G. Albrecht, R. Fitzpatrick, and S. Scrimshaw. Thousand Oaks, Calif.: Sage Publications
-
Fox, Renee C. 2000. "Medical Uncertainty Revisited." In The Handbook of Social Studies in Health and Medicine, ed. G. Albrecht, R. Fitzpatrick, and S. Scrimshaw. Thousand Oaks, Calif.: Sage Publications.
-
(2000)
The Handbook of Social Studies in Health and Medicine
-
-
Fox, R.C.1
-
95
-
-
0004272718
-
-
Chicago: University of Chicago Press
-
Frank, A. 1995. The Wounded Storyteller. Chicago: University of Chicago Press.
-
(1995)
The Wounded Storyteller
-
-
Frank, A.1
-
96
-
-
85044805060
-
At the margins of health: Qualitative methods and practice
-
-. 2006a. "At the Margins of Health: Qualitative Methods and Practice." Qualitative Sociology 29:241-251.
-
(2006)
Qualitative Sociology
, vol.29
, pp. 241-251
-
-
Frank, A.1
-
98
-
-
0023474883
-
Health education, public policy, and disease prevention: A case history of the new york city coalition to end lead poisoning
-
Freudenberg, N., and M. Golub. 1987. "Health Education, Public Policy, and Disease Prevention: A Case History of the New York City Coalition to End Lead Poisoning." Health Education Quarterly 14:387-401.
-
(1987)
Health Education Quarterly
, vol.14
, pp. 387-401
-
-
Freudenberg, N.1
Golub, M.2
-
99
-
-
0023107831
-
Four-year follow-up of psychological reactions to false positive screening tests for congenital hypothyroidism
-
Fyro, K., and G. Bodegard. 1987. "Four-Year Follow-Up of Psychological Reactions to False Positive Screening Tests for Congenital Hypothyroidism." Acta Paediatrica Scandinavica 76:107-114.
-
(1987)
Acta Paediatrica Scandinavica
, vol.76
, pp. 107-114
-
-
Fyro, K.1
Bodegard, G.2
-
100
-
-
0003452177
-
-
Accessed November 8, 2005
-
Genzyme Genetics. "Cystic Fibrosis Mutation Analysis." http://www.genzymegenetics.com/pdf/cf-physician-brochure.pdf. Accessed November 8, 2005.
-
Cystic Fibrosis Mutation Analysis
-
-
-
102
-
-
0034716499
-
Big gap in screening U. S infants for hereditary ills
-
February 26
-
Goldberg, C. 2000. "Big Gap in Screening U. S. Infants for Hereditary Ills." New York Times. February 26.
-
(2000)
New York Times
-
-
Goldberg, C.1
-
103
-
-
0036588828
-
Newborn screening: An overview with an update on recent advances
-
Goodwin, G., M. Msall, B. Vohr, L. Rubin, and J. Padbury. 2002. "Newborn Screening: An Overview with an Update on Recent Advances." Current Problems in Pediatric and Adolescent Health Care 32:144-172.
-
(2002)
Current Problems in Pediatric and Adolescent Health Care
, vol.32
, pp. 144-172
-
-
Goodwin, G.1
Msall, M.2
Vohr, B.3
Rubin, L.4
Padbury, J.5
-
104
-
-
33746442854
-
How and why parents change their attitudes to prenatal diagnosis
-
Götz, I., and M. Götz. 2006. "How and Why Parents Change Their Attitudes to Prenatal Diagnosis." Clinical Child Psychology and Psychiatry 11:293-300.
-
(2006)
Clinical Child Psychology and Psychiatry
, vol.11
, pp. 293-300
-
-
Götz, I.1
Götz, M.2
-
105
-
-
75949149140
-
Reactions to the threatened loss of a child: A vulnerable child syndrome: Pediatric management of the dying child, part III
-
Green, M., and A. J. Solnit. 1964. "Reactions to the Threatened Loss of a Child: A Vulnerable Child Syndrome: Pediatric Management of the Dying Child, Part III." Pediatrics 34:58-66.
-
(1964)
Pediatrics
, vol.34
, pp. 58-66
-
-
Green, M.1
Solnit, A.J.2
-
106
-
-
0037387855
-
'Genetic exceptionalism' in medicine: Clarifying the differences between genetic and nongenetic tests
-
Green, M. J., and J. R. Botkin. 2003. "'Genetic Exceptionalism' in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests." Annals of Internal Medicine 138:571-575.
-
(2003)
Annals of Internal Medicine
, vol.138
, pp. 571-575
-
-
Green, M.J.1
Botkin, J.R.2
-
107
-
-
0034775852
-
Empowering primary care health professionals in medical genetics: How soon? How fast? How far?
-
Greendale, K., and R. E. Pyeritz. 2001. "Empowering Primary Care Health Professionals in Medical Genetics: How Soon? How Fast? How Far?" American Journal of Medical Genetics 106:223-232.
-
(2001)
American Journal of Medical Genetics
, vol.106
, pp. 223-232
-
-
Greendale, K.1
Pyeritz, R.E.2
-
108
-
-
48949093822
-
Is my sick child healthy? Is my healthy child sick? Changing parental experiences of cystic fibrosis in the age of expanded newborn screening
-
Grob, R. 2008. "Is My Sick Child Healthy? Is My Healthy Child Sick? Changing Parental Experiences of Cystic Fibrosis in the Age of Expanded Newborn Screening." Social Science and Medicine 67:1056-1064.
-
(2008)
Social Science and Medicine
, vol.67
, pp. 1056-1064
-
-
Grob, R.1
-
109
-
-
84906458721
-
A house on fire: Newborn screening, parents' advocacy, and the discourse of urgency
-
Forthcoming, ed. B. Hoffman, N. Tomes, R. Grob, and M. Schlesinger. New Brunswick, N. J.: Rutgers University Press
-
-. Forthcoming. "A House on Fire: Newborn Screening, Parents' Advocacy, and the Discourse of Urgency." In Patients as Policy Actors, ed. B. Hoffman, N. Tomes, R. Grob, and M. Schlesinger. New Brunswick, N. J.: Rutgers University Press.
-
Patients as Policy Actors
-
-
Grob, R.1
-
110
-
-
84906478544
-
Astigmatism in the public eye: An analysis of gaps in the media coverage of the ethical and social issues regarding newborn genetic screening
-
Legal, and Social Implications of Genomics Conference, Cleveland, May 2
-
Grob, R., and M. Schlesinger. 2008. "Astigmatism in the Public Eye: An Analysis of Gaps in the Media Coverage of the Ethical and Social Issues Regarding Newborn Genetic Screening." Paper presented at Translating ELSI: Ethical, Legal, and Social Implications of Genomics Conference, Cleveland, May 2.
-
(2008)
Translating ELSI: Ethical
-
-
Grob, R.1
Schlesinger, M.2
-
111
-
-
84906427187
-
Forthcoming
-
ed. B. Hoffman, N. Tomes, R. Grob, and M. Schlesinger. New Brunswick: Rutgers University Press
-
-. Forthcoming. Epilogue to Patients as Policy Actors, ed. B. Hoffman, N. Tomes, R. Grob, and M. Schlesinger. New Brunswick: Rutgers University Press.
-
Epilogue to Patients as Policy Actors
-
-
Grob, R.1
Schlesinger, M.2
-
112
-
-
49149121592
-
Annals of medicine, the reeve effect
-
November 10
-
Groopman, J. 2003. "Annals of Medicine, the Reeve Effect." New Yorker. November 10, 80-93.
-
(2003)
New Yorker
, pp. 80-93
-
-
Groopman, J.1
-
113
-
-
0035679154
-
Assisting states in assessing newborn screening options
-
Grosse, S., and M. Gwinn. 2001. "Assisting States in Assessing Newborn Screening Options." Public Health Reports 116:169-172.
-
(2001)
Public Health Reports
, vol.116
, pp. 169-172
-
-
Grosse, S.1
Gwinn, M.2
-
114
-
-
33645034271
-
From public health emergency to public health service: The implications of evolving criteria for newborn screening panels
-
Grosse, S. D., C. A. Boyle, A. Kenneson, M. J. Khoury, and B. S. Wilfond. 2006. "From Public Health Emergency to Public Health Service: The Implications of Evolving Criteria for Newborn Screening Panels." Pediatrics 117:923-929.
-
(2006)
Pediatrics
, vol.117
, pp. 923-929
-
-
Grosse, S.D.1
Boyle, C.A.2
Kenneson, A.3
Khoury, M.J.4
Wilfond, B.S.5
-
115
-
-
33745297628
-
Expanded newborn screening for biochemical disorders: The effect of a false-positive result
-
Gurian, E. A., D. D. Kinnamon, J. J. Henry, and S. E. Waisbren. 2006. "Expanded Newborn Screening for Biochemical Disorders: The Effect of a False-Positive Result." Pediatrics 117:1915-1921.
-
(2006)
Pediatrics
, vol.117
, pp. 1915-1921
-
-
Gurian, E.A.1
Kinnamon, D.D.2
Henry, J.J.3
Waisbren, S.E.4
-
117
-
-
0029809090
-
The introduction of newborn screening for phenylketonuria: A personal history
-
Guthrie, R. 1996. "The Introduction of Newborn Screening for Phenylketonuria: A Personal History." European Journal of Pediatrics 155, Suppl. 1:S4-S5.
-
(1996)
European Journal of Pediatrics
, vol.155
, Issue.SUPPL. 1
-
-
Guthrie, R.1
-
119
-
-
40049109565
-
Newborn screening showing decreasing incidence of cystic fibrosis
-
Hale, J., R. Parad, and A. Corneau. 2008. "Newborn Screening Showing Decreasing Incidence of Cystic Fibrosis." New England Journal of Medicine 358:973-974.
-
(2008)
New England Journal of Medicine
, vol.358
, pp. 973-974
-
-
Hale, J.1
Parad, R.2
Corneau, A.3
-
120
-
-
0037398070
-
Balancing autonomy and responsibility: The ethics of generating and disclosing genetic information
-
Hallowell, N., C. Foster, R. Eeles, A. Arden-Jones, V. Murday, and M. Watson. 2003. "Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information. " Journal of Medical Ethics 29:74-110.
-
(2003)
Journal of Medical Ethics
, vol.29
, pp. 74-110
-
-
Hallowell, N.1
Foster, C.2
Eeles, R.3
Arden-Jones, A.4
Murday, V.5
Watson, M.6
-
121
-
-
0016078312
-
Sickle cell 'nondisease': A potentially serious public health problem
-
Hampton, M. L., J. Anderson, B. S. Lavizzo, and A. B. Bergman. 1974. "Sickle Cell 'Nondisease': A Potentially Serious Public Health Problem." American Journal of Diseases of Children 128:58-61.
-
(1974)
American Journal of Diseases of Children
, vol.128
, pp. 58-61
-
-
Hampton, M.L.1
Anderson, J.2
Lavizzo, B.S.3
Bergman, A.B.4
-
123
-
-
84889291484
-
Genetic citizenship
-
ed. J. Vincent, Malden, Mass.: Blackwell
-
Heath, D., R. Rapp, and K. S. Taussig. 2004. "Genetic Citizenship. " In A Companion to the Anthropology of Politics, ed. J. Vincent, 152-167. Malden, Mass.: Blackwell.
-
(2004)
A Companion to the Anthropology of Politics
, pp. 152-167
-
-
Heath, D.1
Rapp, R.2
Taussig, K.S.3
-
124
-
-
0038142297
-
Expansion and uncertainty: Cystic fibrosis, classification, and genetics
-
Hedgecoe, A. M. 1993. "Expansion and Uncertainty: Cystic Fibrosis, Classification, and Genetics." Sociology of Health and Illness 25:50-70.
-
(1993)
Sociology of Health and Illness
, vol.25
, pp. 50-70
-
-
Hedgecoe, A.M.1
-
125
-
-
84906447214
-
The case for universal newborn screening
-
August, 88
-
Hehmeyer, C. P. 2001. "The Case for Universal Newborn Screening." Exceptional Parent Magazine. August, 88.
-
(2001)
Exceptional Parent Magazine
-
-
Hehmeyer, C.P.1
-
126
-
-
19444373555
-
Necessary collusion: Prognostic communication with advanced cancer patients
-
Helft, P. R. 2005. "Necessary Collusion: Prognostic Communication with Advanced Cancer Patients." Journal of Clinical Oncology 23:3146-3150.
-
(2005)
Journal of Clinical Oncology
, vol.23
, pp. 3146-3150
-
-
Helft, P.R.1
-
127
-
-
36249007037
-
Communication pitfalls with cancer patients: 'Hitand-run' deliveries of bad news
-
Helft, P. R., and S. Petronio. 2007. "Communication Pitfalls with Cancer Patients: 'Hitand-Run' Deliveries of Bad News." Journal of the American College of Surgeons 205:807-811.
-
(2007)
Journal of the American College of Surgeons
, vol.205
, pp. 807-811
-
-
Helft, P.R.1
Petronio, S.2
-
128
-
-
84906458713
-
Genetic mapping of babies by 2019 will transform preventive medicine
-
February 9
-
Henderson, M. 2009. "Genetic Mapping of Babies by 2019 Will Transform Preventive Medicine." The Times/Sunday Times. February 9. http://www.timesonline.co.uk/tol/news/science/article5689052.ece.
-
(2009)
The Times/Sunday Times
-
-
Henderson, M.1
-
129
-
-
33748704081
-
A review of the psychosocial effects of false-positive results on parents and current communication practices in newborn screening
-
Hewlett, J., and S. E. Waisbren. 2006. "A Review of the Psychosocial Effects of False-Positive Results on Parents and Current Communication Practices in Newborn Screening." Journal of Inherited Metabolic Disease 29:677-682.
-
(2006)
Journal of Inherited Metabolic Disease
, vol.29
, pp. 677-682
-
-
Hewlett, J.1
Waisbren, S.E.2
-
131
-
-
0030746725
-
Public participation in medical policy-making and the status of consumer autonomy: The example of newborn-screening programs in the United States
-
Hiller, E., G. Landenburger, and M. R. Natowicz. 1997. "Public Participation in Medical Policy-Making and the Status of Consumer Autonomy: The Example of Newborn-Screening Programs in the United States." American Journal of Public Health 87:1280-1289.
-
(1997)
American Journal of Public Health
, vol.87
, pp. 1280-1289
-
-
Hiller, E.1
Landenburger, G.2
Natowicz, M.R.3
-
133
-
-
33745321363
-
Practices and perceptions of long-term follow-up across state newborn screening programs
-
Hoff, T., and A. Hoyt. 2006. "Practices and Perceptions of Long-Term Follow-Up across State Newborn Screening Programs." Pediatrics 117:1922-1929.
-
(2006)
Pediatrics
, vol.117
, pp. 1922-1929
-
-
Hoff, T.1
Hoyt, A.2
-
135
-
-
84906478542
-
Forthcoming
-
New Brunswick, N. J.: Rutgers University Press
-
Hoffman, B., N. Tomes, R. Grob, and M. Schlesinger, eds. Forthcoming. Patients as Policy Makers. New Brunswick, N. J.: Rutgers University Press.
-
Patients as Policy Makers
-
-
Hoffman, B.1
Tomes, N.2
Grob, R.3
Schlesinger, M.4
-
136
-
-
0025990218
-
What drives neonatal screening programs?
-
Holtzman, N. A. 1991. "What Drives Neonatal Screening Programs?" New England Journal of Medicine 325:802-804.
-
(1991)
New England Journal of Medicine
, vol.325
, pp. 802-804
-
-
Holtzman, N.A.1
-
137
-
-
33846014705
-
Advisory committee on heritable disorders and genetic diseases in newborns and children
-
Howell, R. R. 2006a. "Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. " Mental Retardation and Developmental Disabilities Research Reviews 12:313-315.
-
(2006)
Mental Retardation and Developmental Disabilities Research Reviews
, vol.12
, pp. 313-315
-
-
Howell, R.R.1
-
138
-
-
33646843914
-
We need expanded newborn screening
-
-. 2006b. "We Need Expanded Newborn Screening." Pediatrics 117:1800-1805.
-
(2006)
Pediatrics
, vol.117
, pp. 1800-1805
-
-
Howell, R.R.1
-
140
-
-
0242381052
-
Legal and policy implications of recent advances in prenatal diagnosis and fetal therapy
-
Hubbard, R. 1982. "Legal and Policy Implications of Recent Advances in Prenatal Diagnosis and Fetal Therapy." Women's Rights Law Reporter 7:210-218.
-
(1982)
Women's Rights Law Reporter
, vol.7
, pp. 210-218
-
-
Hubbard, R.1
-
142
-
-
0003623055
-
-
Boston: Beacon Press
-
Hubbard, R., and E. Wald. 1999. Exploding the Myth: How Genetic Information Is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators, and Law Enforcers. Boston: Beacon Press.
-
(1999)
Exploding the Myth: How Genetic Information is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators, and Law Enforcers
-
-
Hubbard, R.1
Wald, E.2
-
145
-
-
7044237129
-
-
Princeton: Princeton University Press
-
Jasanoff, S. 2005. Designs on Nature. Princeton: Princeton University Press.
-
(2005)
Designs on Nature
-
-
Jasanoff, S.1
-
146
-
-
19544382079
-
The liberalism of life: Bioethics in the face of biopower
-
Jennings, B. 2003. "The Liberalism of Life: Bioethics in the Face of Biopower." Raritan 22:132-139.
-
(2003)
Raritan
, vol.22
, pp. 132-139
-
-
Jennings, B.1
-
147
-
-
84906427184
-
Ethics and newborn genetic screening: New technologies, new challenges
-
ed. M. A. Baily and T. H. Murray, Baltimore: Johns Hopkins University Press
-
Jennings, B., and A. Bonnicksen. 2009. "Ethics and Newborn Genetic Screening: New Technologies, New Challenges." In Ethics and Newborn Genetic Screening: New Technologies, New Challenges, ed. M. A. Baily and T. H. Murray, 136-159. Baltimore: Johns Hopkins University Press.
-
(2009)
Ethics and Newborn Genetic Screening: New Technologies, New Challenges
, pp. 136-159
-
-
Jennings, B.1
Bonnicksen, A.2
-
148
-
-
0031914875
-
Community representatives: Representing the community?
-
Jewkes, R., and A. Murcott. 1998. "Community Representatives: Representing the Community?" Social Science and Medicine 46:843-858.
-
(1998)
Social Science and Medicine
, vol.46
, pp. 843-858
-
-
Jewkes, R.1
Murcott, A.2
-
150
-
-
33749046765
-
Newborn screening fact sheets
-
the Committee on Genetics
-
Kaye, C., and the Committee on Genetics. 2006. "Newborn Screening Fact Sheets." Pediatrics 118:e934-e963.
-
(2006)
Pediatrics
, vol.118
-
-
Kaye, C.1
-
151
-
-
42149120774
-
Long-term follow-up after diagnosis resulting from newborn screening: Statement of the US secretary of health and human services' advisory committee on heritable disorders and genetic diseases in newborns and children
-
Kemper, A. R., C. A. Boyle, J. Aceves, D. Dougherty, J. Figge, J. L. Fisch, A. R. Hinman, C. L. Greene, C. A. Kus, and J. Miller. 2008. "Long-Term Follow-Up after Diagnosis Resulting from Newborn Screening: Statement of the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. " Genetics in Medicine 10:259-261.
-
(2008)
Genetics in Medicine
, vol.10
, pp. 259-261
-
-
Kemper, A.R.1
Boyle, C.A.2
Aceves, J.3
Dougherty, D.4
Figge, J.5
Fisch, J.L.6
Hinman, A.R.7
Greene, C.L.8
Kus, C.A.9
Miller, J.10
-
152
-
-
33750954779
-
Primary care physicians' attitudes regarding follow-up care for children with positive newborn screening results
-
Kemper, A. R., R. L. Uren, K. L. Moseley, and S. J. Clark. 2006. "Primary Care Physicians' Attitudes Regarding Follow-Up Care for Children with Positive Newborn Screening Results." Pediatrics 118:1836-1841.
-
(2006)
Pediatrics
, vol.118
, pp. 1836-1841
-
-
Kemper, A.R.1
Uren, R.L.2
Moseley, K.L.3
Clark, S.J.4
-
154
-
-
0022904060
-
Attitudes of persons at risk for huntington disease toward predictive testing
-
Kessler, S., T. Field, L. Worth, and H. Mosbarger. 1987. "Attitudes of Persons at Risk for Huntington Disease toward Predictive Testing." American Journal of Medical Genetics 26:259-270.
-
(1987)
American Journal of Medical Genetics
, vol.26
, pp. 259-270
-
-
Kessler, S.1
Field, T.2
Worth, L.3
Mosbarger, H.4
-
156
-
-
37349116252
-
The continuum of translation research in genomic medicine: How can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention?
-
Khoury, M., M. Gwinn, P. W. Yoon, N. Dowling, C. A. Moore, and L. Bradley. 2007. "The Continuum of Translation Research in Genomic Medicine: How Can We Accelerate the Appropriate Integration of Human Genome Discoveries into Health Care and Disease Prevention?" Genetics in Medicine 9:665-674.
-
(2007)
Genetics in Medicine
, vol.9
, pp. 665-674
-
-
Khoury, M.1
Gwinn, M.2
Yoon, P.W.3
Dowling, N.4
Moore, C.A.5
Bradley, L.6
-
158
-
-
0008716305
-
Personal experience of illness
-
ed. G. C. Albrecht, R. Fitzpatrick, and S. C. Scrimshaw, London: Sage Publications
-
Kleinman, A., and D. Seeman. 2000. "Personal Experience of Illness." In The Handbook of Social Studies in Health and Medicine, ed. G. C. Albrecht, R. Fitzpatrick, and S. C. Scrimshaw, 230-242. London: Sage Publications.
-
(2000)
The Handbook of Social Studies in Health and Medicine
, pp. 230-242
-
-
Kleinman, A.1
Seeman, D.2
-
160
-
-
0023658215
-
Panel urges newborn sickle cell screening
-
Kolata, G. 1987. "Panel Urges Newborn Sickle Cell Screening." Science 236:259-260.
-
(1987)
Science
, vol.236
, pp. 259-260
-
-
Kolata, G.1
-
161
-
-
16244371025
-
Panel to advise tests on babies for 29 diseases
-
February 21
-
-. 2005. "Panel to Advise Tests on Babies for 29 Diseases." New York Times. February 21.
-
(2005)
New York Times
-
-
Kolata, G.1
-
164
-
-
70350217929
-
Impact of false-positive newborn metabolic screening results on early health care utilization
-
Lipstein, E. A., J. M. Perrin, S. E. Waisbren, and L. A. Prosser. 2009. "Impact of False-Positive Newborn Metabolic Screening Results on Early Health Care Utilization. " Genetics in Medicine 11:716-721.
-
(2009)
Genetics in Medicine
, vol.11
, pp. 716-721
-
-
Lipstein, E.A.1
Perrin, J.M.2
Waisbren, S.E.3
Prosser, L.A.4
-
165
-
-
84937321104
-
-
New Brunswick, N. J.: Rutgers University Press
-
Litt, J. 2000. Medicalized Motherhood. New Brunswick, N. J.: Rutgers University Press.
-
(2000)
Medicalized Motherhood
-
-
Litt, J.1
-
166
-
-
0036515565
-
Newborn screening and genetic testing
-
Lloyd-Puryear, M. A., and I. Forsman. 2002. "Newborn Screening and Genetic Testing." Journal of Obstetric, Gynecologic, and Neonatal Issues 31:200-207.
-
(2002)
Journal of Obstetric, Gynecologic, and Neonatal Issues
, vol.31
, pp. 200-207
-
-
Lloyd-Puryear, M.A.1
Forsman, I.2
-
167
-
-
0030898085
-
Reluctant rationers: Public input to health care priorities
-
Lomas, J. 1997. "Reluctant Rationers: Public Input to Health Care Priorities." Journal of Health Services Research and Policy 2:103-111.
-
(1997)
Journal of Health Services Research and Policy
, vol.2
, pp. 103-111
-
-
Lomas, J.1
-
169
-
-
0003999764
-
-
London: Routledge
-
-. 1999. Risk. London: Routledge.
-
(1999)
Risk
-
-
Lupton, D.1
-
171
-
-
35348973110
-
Risk as moral danger: The social and political functions of risk discourse in public health
-
ed. P. Conrad, New York: Worth Publishers
-
-. 2001. "Risk as Moral Danger: The Social and Political Functions of Risk Discourse in Public Health." In The Sociology of Health and Illness: Critical Perspectives, ed. P. Conrad, 394-401. New York: Worth Publishers.
-
(2001)
The Sociology of Health and Illness: Critical Perspectives
, pp. 394-401
-
-
Lupton, D.1
-
172
-
-
0001315299
-
The public understanding of science or the scientific understanding of the public? A review of the social context of the 'new genetics.'
-
Macintyre, S. 1995. "The Public Understanding of Science or the Scientific Understanding of the Public? A Review of the Social Context of the 'New Genetics.'" Public Understanding of Science 4:223-232.
-
(1995)
Public Understanding of Science
, vol.4
, pp. 223-232
-
-
Macintyre, S.1
-
175
-
-
84906427185
-
The power of us: A new approach to advocacy for breast cancer
-
Forthcoming, ed. B. Hoffman, N. Tomes, R. Grob, and M. Schlesinger. New Brunswick, N. J.: Rutgers University Press
-
Marcus, A. D. Forthcoming. "The Power of Us: A New Approach to Advocacy for Breast Cancer." In Patients as Policy Makers, ed. B. Hoffman, N. Tomes, R. Grob, and M. Schlesinger. New Brunswick, N. J.: Rutgers University Press.
-
Patients as Policy Makers
-
-
Marcus, A.D.1
-
176
-
-
0035861518
-
Fast technology drives new world of newborn screening
-
Marshall, E. 2001. "Fast Technology Drives New World of Newborn Screening." Science 294:2272-2274.
-
(2001)
Science
, vol.294
, pp. 2272-2274
-
-
Marshall, E.1
-
178
-
-
0026526899
-
Effects of genetic screening on perception of health: A pilot study
-
Marteau, T. M., M. van Duijn, and I. Ellis. 1992. "Effects of Genetic Screening on Perception of Health: A Pilot Study." Journal of Medical Genetics 29:24-26.
-
(1992)
Journal of Medical Genetics
, vol.29
, pp. 24-26
-
-
Marteau, T.M.1
Van Duijn, M.2
Ellis, I.3
-
179
-
-
0042899943
-
Births: Final data for 2006
-
Hyattsville, Md.: National Center for Health Statistics
-
Martin, J. A., B. E. Hamilton, P. D. Sutton, S. J. Ventura, F. Menacker, S. Kirmeyer, and T. J. Mathews. 2009. "Births: Final Data for 2006." National Vital Statistics Reports 57, no 7. Hyattsville, Md.: National Center for Health Statistics.
-
(2009)
National Vital Statistics Reports
, vol.57
, Issue.7
-
-
Martin, J.A.1
Hamilton, B.E.2
Sutton, P.D.3
Ventura, S.J.4
Menacker, F.5
Kirmeyer, S.6
Mathews, T.J.7
-
180
-
-
77953745081
-
Declining prevalence of cystic fibrosis since the introduction of newborn screening
-
Massie, J., L. Curnow, L. Gaffney, J. Carlin, and I. Francis. 2010. "Declining Prevalence of Cystic Fibrosis since the Introduction of Newborn Screening." Archives of Disease in Childhood 95:531-533.
-
(2010)
Archives of Disease in Childhood
, vol.95
, pp. 531-533
-
-
Massie, J.1
Curnow, L.2
Gaffney, L.3
Carlin, J.4
Francis, I.5
-
181
-
-
24344440989
-
-
Maternal and Child Health Bureau, Health Resources and Services Administration, U. S. Department of Health and Human Services MCHB
-
Maternal and Child Health Bureau, Health Resources and Services Administration, U. S. Department of Health and Human Services [MCHB]. "Newborn Screening: Toward a Uniform Screening Panel and System." http://www.mchb.hrsa.gov/screening/summary.htm.
-
Newborn Screening: Toward a Uniform Screening Panel and System
-
-
-
182
-
-
0000637511
-
On 'realization' in everyday life: The forecasting of bad news as a social relation
-
Maynard, D. 1996. "On 'Realization' in Everyday Life: The Forecasting of Bad News as a Social Relation. " American Sociological Review 61:109-131.
-
(1996)
American Sociological Review
, vol.61
, pp. 109-131
-
-
Maynard, D.1
-
183
-
-
0035220355
-
Using and misusing anecdote in policy making
-
McDonough, J. E. 2001. "Using and Misusing Anecdote in Policy Making." Health Affairs 20:207-212.
-
(2001)
Health Affairs
, vol.20
, pp. 207-212
-
-
McDonough, J.E.1
-
186
-
-
0037315258
-
Early versus late diagnosis: Psychological impact on parents of children with cystic fibrosis
-
Mérelle, M. E., J. Huisman, A. Alderden-van der Vecht, F. Taat, D. Bezemer, R. W. Griffioen, G. Brinkhorst, and J. E. Dankert-Roelse. 2003. "Early versus Late Diagnosis: Psychological Impact on Parents of Children with Cystic Fibrosis." Pediatrics 111:346-350.
-
(2003)
Pediatrics
, vol.111
, pp. 346-350
-
-
Mérelle, M.E.1
Huisman, J.2
Alderden-Van Der Vecht, A.3
Taat, F.4
Bezemer, D.5
Griffioen, R.W.6
Brinkhorst, G.7
Dankert-Roelse, J.E.8
-
187
-
-
84905150382
-
Newborns at risk: How georgia's health screening practices can put newborns at risk; limited testing, poor follow-up allow disorders to go untreated
-
February 2
-
Miller A., and P. Guthrie. 2003. "Newborns at Risk: How Georgia's Health Screening Practices Can Put Newborns at Risk; Limited Testing, Poor Follow-up Allow Disorders to Go Untreated." Atlanta Journal-Constitution. February 2.
-
(2003)
Atlanta Journal-constitution
-
-
Miller, A.1
Guthrie, P.2
-
188
-
-
27644577952
-
Ruling in and ruling out: Implications of molecular genetic diagnoses for disease classification
-
Miller, F. A., C. Ahern, J. Ogilvie, M. Giacomini, and L. Schwartz. 2005. "Ruling In and Ruling Out: Implications of Molecular Genetic Diagnoses for Disease Classification. " Social Science and Medicine 61:2536-2545.
-
(2005)
Social Science and Medicine
, vol.61
, pp. 2536-2545
-
-
Miller, F.A.1
Ahern, C.2
Ogilvie, J.3
Giacomini, M.4
Schwartz, L.5
-
189
-
-
77149166613
-
Understanding sickle cell carrier status identified through newborn screening: A qualitative study
-
Miller, F. A., M. Paynter, R. Z. Hayeems, J. Little, J. C. Carroll, B. Wilson, J. Allanson, J. P. Bytautas, and P. Chakraborty. 2010. "Understanding Sickle Cell Carrier Status Identified through Newborn Screening: A Qualitative Study." European Journal of Human Genetics 18:303-308.
-
(2010)
European Journal of Human Genetics
, vol.18
, pp. 303-308
-
-
Miller, F.A.1
Paynter, M.2
Hayeems, R.Z.3
Little, J.4
Carroll, J.C.5
Wilson, B.6
Allanson, J.7
Bytautas, J.P.8
Chakraborty, P.9
-
190
-
-
59049104987
-
Questioning the consensus: Managing carrier status results generated by newborn screening
-
Miller, F. A., J. S. Robert, and R. Z. Hayeems. 2009. "Questioning the Consensus: Managing Carrier Status Results Generated by Newborn Screening." American Journal of Public Health 99:210-215.
-
(2009)
American Journal of Public Health
, vol.99
, pp. 210-215
-
-
Miller, F.A.1
Robert, J.S.2
Hayeems, R.Z.3
-
191
-
-
0042885839
-
Community-based participatory research: Implications for public health funding
-
Minkler, M., A. G. Blackwell, M. Thompson, and H. Tami. 2003. "Community-Based Participatory Research: Implications for Public Health Funding." American Journal of Public Health 93:1210-1213.
-
(2003)
American Journal of Public Health
, vol.93
, pp. 1210-1213
-
-
Minkler, M.1
Blackwell, A.G.2
Thompson, M.3
Tami, H.4
-
193
-
-
84906447209
-
Hennepin county district court rules MDH not in violation of privacy laws
-
Minnesota Lawyer Staff, December 7
-
Minnesota Lawyer Staff. 2009. "Hennepin County District Court Rules MDH Not in Violation of Privacy Laws." Minnesota Lawyer. December 7.
-
(2009)
Minnesota Lawyer
-
-
-
194
-
-
0031831797
-
Cystic fibrosis newborn screening: Impact on reproductive behavior and implications for genetic counseling
-
Mischler, E., B. S. Wilfond, N. Fost, and A. Laxova. 1998. "Cystic Fibrosis Newborn Screening: Impact on Reproductive Behavior and Implications for Genetic Counseling." Pediatrics 102:44-53.
-
(1998)
Pediatrics
, vol.102
, pp. 44-53
-
-
Mischler, E.1
Wilfond, B.S.2
Fost, N.3
Laxova, A.4
-
197
-
-
82755188141
-
CFTR-related disorders
-
Moskowitz, S., J. Chmiel, D. Sterner, E. Cheng, and G. Cutting. 2005. "CFTR-Related Disorders." Gene Reviews. http://www.ncbi.nlm.nih.gov/ books/NBK/250/.
-
(2005)
Gene Reviews
-
-
Moskowitz, S.1
Chmiel, J.2
Sterner, D.3
Cheng, E.4
Cutting, G.5
-
198
-
-
44849139821
-
Expanding newborn screening: Process, policy, and priorities
-
on Behalf of the U. S. Preventive Services Task Force
-
Moyer, V., N. Calonge, S. Teutsch, and J. Botkin, on Behalf of the U. S. Preventive Services Task Force. 2008. "Expanding Newborn Screening: Process, Policy, and Priorities." Hastings Center Report 38:32-39.
-
(2008)
Hastings Center Report
, vol.38
, pp. 32-39
-
-
Moyer, V.1
Calonge, N.2
Teutsch, S.3
Botkin, J.4
-
199
-
-
0036240617
-
Educational advocacy for children with autism
-
Mulick, J. A., and E. M. Butter. 2002. "Educational Advocacy for Children with Autism." Behavioral Interventions 17:57-74.
-
(2002)
Behavioral Interventions
, vol.17
, pp. 57-74
-
-
Mulick, J.A.1
Butter, E.M.2
-
203
-
-
0030341936
-
The social dynamics of genetic testing: The case of fragile-X
-
-. 1996. "The Social Dynamics of Genetic Testing: The Case of Fragile-X." Medical Anthropology Quarterly 10:537-550.
-
(1996)
Medical Anthropology Quarterly
, vol.10
, pp. 537-550
-
-
Nelkin, D.1
-
205
-
-
0038624107
-
Ethical issues with genetic testing in pediatrics
-
Nelson, R. M., J. R. Botkin, E. D. Kadish, M. Levetown, J. T. Truman, B. S. Wilfond, C. E. Harrison, A. Kazura, E. Krug III, P. A. Schwartz et al. 2001. "Ethical Issues with Genetic Testing in Pediatrics." Pediatrics 107:1451-1455.
-
(2001)
Pediatrics
, vol.107
, pp. 1451-1455
-
-
Nelson, R.M.1
Botkin, J.R.2
Kadish, E.D.3
Levetown, M.4
Truman, J.T.5
Wilfond, B.S.6
Harrison, C.E.7
Kazura, A.8
Krug III, E.9
Schwartz, P.A.10
-
206
-
-
0001373172
-
Serving the family from birth to the medical home. Newborn screening: A blueprint for the future. A call for a national agenda on state newborn screening programs
-
Newborn Screening NBS Task Force
-
Newborn Screening [NBS] Task Force. 2000. "Serving the Family from Birth to the Medical Home. Newborn Screening: A Blueprint for the Future. A Call for a National Agenda on State Newborn Screening Programs." Pediatrics 106:386-427.
-
(2000)
Pediatrics
, vol.106
, pp. 386-427
-
-
-
207
-
-
84906437689
-
Newborn genetic screening
-
National Conference of State Legislatures. June
-
Oliver, L. 2002. "Newborn Genetic Screening." Genetics Brief 10, National Conference of State Legislatures. June.
-
(2002)
Genetics Brief
, pp. 10
-
-
Oliver, L.1
-
208
-
-
0345602014
-
Psychosocial issues in newborn screening for cystic fibrosis
-
Parsons, E., and D. M. Bradley. 2003. "Psychosocial Issues in Newborn Screening for Cystic Fibrosis." Pediatric Respiratory Reviews 4:285-292.
-
(2003)
Pediatric Respiratory Reviews
, vol.4
, pp. 285-292
-
-
Parsons, E.1
Bradley, D.M.2
-
209
-
-
0039965644
-
'Problematics of government', (post) modernity, and social work
-
Parton, N. 1994. "'Problematics of Government', (Post) Modernity, and Social Work." British Journal of Social Work 24:9-32.
-
(1994)
British Journal of Social Work
, vol.24
, pp. 9-32
-
-
Parton, N.1
-
212
-
-
0033278265
-
Contesting consent: The challenge to compulsory neonatal screening for PKU
-
-. 1999. "Contesting Consent: The Challenge to Compulsory Neonatal Screening for PKU." Perspectives in Biology and Medicine 42:207-219.
-
(1999)
Perspectives in Biology and Medicine
, vol.42
, pp. 207-219
-
-
Paul, D.1
-
213
-
-
0034214356
-
A double-edged sword
-
-. 2000. "A Double-Edged Sword." Nature 405:515.
-
(2000)
Nature
, vol.405
, pp. 515
-
-
Paul, D.1
-
215
-
-
0343683619
-
The struggle over metabolic screening
-
ed. S. de Chadarevian and H. Kamminga, Reading, U. K.: Harwood Academic Publishers
-
Paul, D., and P. J. Edelson. 1998. "The Struggle over Metabolic Screening." In Molecularising Biology and Medicine: New Practices and Alliances, 1930s-1970s, ed. S. de Chadarevian and H. Kamminga, 203-220. Reading, U. K.: Harwood Academic Publishers.
-
(1998)
Molecularising Biology and Medicine: New Practices and Alliances, 1930s-1970s
, pp. 203-220
-
-
Paul, D.1
Edelson, P.J.2
-
217
-
-
84972048113
-
In search of the issue-attention cycle
-
Peters, B. G., and B. W. Hogwood. 1985. "In Search of the Issue-Attention Cycle." Journal of Politics 47:238-253.
-
(1985)
Journal of Politics
, vol.47
, pp. 238-253
-
-
Peters, B.G.1
Hogwood, B.W.2
-
220
-
-
84899298547
-
Redefining disease, genes and all
-
May 6
-
Pollack, A. 2008. "Redefining Disease, Genes and All." New York Times. May 6.
-
(2008)
New York Times
-
-
Pollack, A.1
-
222
-
-
4143105647
-
Preconceptional cystic fibrosis carrier screening: Attitudes and intentions of the target population
-
Poppelaars, F. A. M., L. Henneman, H. J. Adèr, M. C. Cornel, R. P. M. G. Hermens, G. Van der Wal, and L. P. Ten Kate. 2004. "Preconceptional Cystic Fibrosis Carrier Screening: Attitudes and Intentions of the Target Population. " Genetic Testing 8:80-89.
-
(2004)
Genetic Testing
, vol.8
, pp. 80-89
-
-
Poppelaars, F.A.M.1
Henneman, L.2
Adèr, H.J.3
Cornel, M.C.4
Hermens, R.P.M.G.5
Van Der Wal, G.6
Ten Kate, L.P.7
-
223
-
-
41249098719
-
Newborn blood spot screening in four countries: Stakeholder involvement
-
Potter, B. K., D. Avard, and B. J. Wilson. 2008. "Newborn Blood Spot Screening in Four Countries: Stakeholder Involvement." Journal of Public Health Policy 29:121-142.
-
(2008)
Journal of Public Health Policy
, vol.29
, pp. 121-142
-
-
Potter, B.K.1
Avard, D.2
Wilson, B.J.3
-
227
-
-
40649104791
-
Findings consensus on the physiotherapy management of asymptomatic infants with cystic fibrosis
-
Prasad, A., E. Main, and M. E. Dodd. 2008. "Findings Consensus on the Physiotherapy Management of Asymptomatic Infants with Cystic Fibrosis." Pediatric Pulmonology 43:236-244.
-
(2008)
Pediatric Pulmonology
, vol.43
, pp. 236-244
-
-
Prasad, A.1
Main, E.2
Dodd, M.E.3
-
229
-
-
50949089911
-
Parental tolerance of false-positive newborn screening results
-
Prosser, L. A., J. A. Ladapo, D. Rusinak, and S. E. Waisbren. 2008. "Parental Tolerance of False-Positive Newborn Screening Results." Archives of Pediatric and Adolescent Medicine 162:870-876.
-
(2008)
Archives of Pediatric and Adolescent Medicine
, vol.162
, pp. 870-876
-
-
Prosser, L.A.1
Ladapo, J.A.2
Rusinak, D.3
Waisbren, S.E.4
-
231
-
-
0031805038
-
Role strain in couples with and without a child with chronic illness: Associations with marital satisfaction, intimacy, and daily mood
-
Quittner, A. L., D. L. Espelage, L. C. Opipari, B. Carter, N. Eid, and H. Eigen. 1998. "Role Strain in Couples with and without a Child with Chronic Illness: Associations with Marital Satisfaction, Intimacy, and Daily Mood." American Psychological Association 17:112-124.
-
(1998)
American Psychological Association
, vol.17
, pp. 112-124
-
-
Quittner, A.L.1
Espelage, D.L.2
Opipari, L.C.3
Carter, B.4
Eid, N.5
Eigen, H.6
-
233
-
-
33748696567
-
Making the invisible body visible: Bone scans, osteoporosis, and women's bodily experiences
-
Reventlow, S., A. C. Hvas, and K. Malterud. 2006. "Making the Invisible Body Visible: Bone Scans, Osteoporosis, and Women's Bodily Experiences." Social Science and Medicine 62:2720-2731.
-
(2006)
Social Science and Medicine
, vol.62
, pp. 2720-2731
-
-
Reventlow, S.1
Hvas, A.C.2
Malterud, K.3
-
234
-
-
21344491911
-
The new genetics: Some issues for social scientists
-
Richards, M. P. M. 1993. "The New Genetics: Some Issues for Social Scientists." Sociology of Health and Illness 15:567-586.
-
(1993)
Sociology of Health and Illness
, vol.15
, pp. 567-586
-
-
Richards, M.P.M.1
-
236
-
-
0025324118
-
Strategic uses of narrative in the presentation of self and illness
-
Riessman, C. 1990. "Strategic Uses of Narrative in the Presentation of Self and Illness." Social Science and Medicine 30(11):1195-1200.
-
(1990)
Social Science and Medicine
, vol.30
, Issue.11
, pp. 1195-1200
-
-
Riessman, C.1
-
239
-
-
12344306026
-
Lullabies for Sophia
-
Rosner, J. 2004. "Lullabies for Sophia." Hastings Center Report 34(6):20-21.
-
(2004)
Hastings Center Report
, vol.34
, Issue.6
, pp. 20-21
-
-
Rosner, J.1
-
240
-
-
0037235021
-
Minimizing risks: The ethics of predictive diabetes mellitus screening research in newborns
-
Ross, L. F. 2003. "Minimizing Risks: The Ethics of Predictive Diabetes Mellitus Screening Research in Newborns." Archives of Pediatrics and Adolescent Medicine 157:89-95.
-
(2003)
Archives of Pediatrics and Adolescent Medicine
, vol.157
, pp. 89-95
-
-
Ross, L.F.1
-
247
-
-
84906445971
-
Saved by a drop of blood; states expand routine testing of newborns
-
July
-
Rubin, R. 2006. "Saved by a Drop of Blood; States Expand Routine Testing of Newborns." USA Today. July, 9D.
-
(2006)
USA Today
-
-
Rubin, R.1
-
249
-
-
0036306565
-
Bad news from the patient's perspective: An analysis of the written narratives of newly diagnosed cancer patients
-
Salander, P. 2002. "Bad News from the Patient's Perspective: An Analysis of the Written Narratives of Newly Diagnosed Cancer Patients." Social Science and Medicine 55:721-732.
-
(2002)
Social Science and Medicine
, vol.55
, pp. 721-732
-
-
Salander, P.1
-
250
-
-
17744378247
-
The case against perfection
-
April
-
Sandel, M. J. 2004. "The Case against Perfection. " The Atlantic. April, 51-62.
-
(2004)
The Atlantic
, pp. 51-62
-
-
Sandel, M.J.1
-
251
-
-
33749079236
-
Changing their minds with time: A comparison of hypothetical and actual reproductive behaviors in parents of children with cystic fibrosis
-
Sawyer, S. M., B. Cerritelli, L. C. Carter, M. Cooke, J. A. Glazner, and J. Massie. 2006. "Changing Their Minds with Time: A Comparison of Hypothetical and Actual Reproductive Behaviors in Parents of Children with Cystic Fibrosis." Pediatrics 118:e649-e656.
-
(2006)
Pediatrics
, vol.118
-
-
Sawyer, S.M.1
Cerritelli, B.2
Carter, L.C.3
Cooke, M.4
Glazner, J.A.5
Massie, J.6
-
252
-
-
84995231107
-
Psychological issues in genetic counseling of Phenylketonuria
-
ed. S. Kessler. New York: Academic Press
-
Schild, S. 1979. "Psychological Issues in Genetic Counseling of Phenylketonuria." In Genetic Counseling: Psychological Dimensions, ed. S. Kessler. New York: Academic Press.
-
(1979)
Genetic Counseling: Psychological Dimensions
-
-
Schild, S.1
-
253
-
-
84906427181
-
The canary in the gemeinschaft: The public voice of patients as a means of enhancing health system performance
-
Forthcoming, ed. B. Hoffman, N. Tomes, R. Grob, and M. Schlesinger. New Brunswick, N. J.: Rutgers University Press
-
Schlesinger, M. Forthcoming. "The Canary in the Gemeinschaft: The Public Voice of Patients as a Means of Enhancing Health System Performance." In Patients as Policy Actors, ed. B. Hoffman, N. Tomes, R. Grob, and M. Schlesinger. New Brunswick, N. J.: Rutgers University Press.
-
Patients as Policy Actors
-
-
Schlesinger, M.1
-
255
-
-
84894789073
-
The struggle to breathe: Living the life of expectancy with cystic fibrosis
-
Schubert, D., and M. Murphy. 2005. "The Struggle to Breathe: Living the Life of Expectancy with Cystic Fibrosis." Oral History Review 32:35-55.
-
(2005)
Oral History Review
, vol.32
, pp. 35-55
-
-
Schubert, D.1
Murphy, M.2
-
256
-
-
0034596493
-
Neonatal screening for cystic fibrosis in brittany, france: Assessment of 10 years' experience and impact on prenatal diagnosis
-
Scotet, V., M. De Braekeleer, G. Rault, P. Parent, M. Dagome, H. Journel, A. Lemoigne, J.-P. Codet, M. Catheline, V. David et al. 2000. "Neonatal Screening for Cystic Fibrosis in Brittany, France: Assessment of 10 Years' Experience and Impact on Prenatal Diagnosis." Lancet 356:789-794.
-
(2000)
Lancet
, vol.356
, pp. 789-794
-
-
Scotet, V.1
De Braekeleer, M.2
Rault, G.3
Parent, P.4
Dagome, M.5
Journel, H.6
Lemoigne, A.7
Codet, J.-P.8
Catheline, M.9
David, V.10
-
258
-
-
33846910543
-
Cystic fibrosis diagnosed after 2 months of age leads to worse outcomes and requires more therapy
-
Sims, E. J., A. Clark, J. McCormick, G. Mehta, G. Connett, and A. Mehta. 2007. "Cystic Fibrosis Diagnosed after 2 Months of Age Leads to Worse Outcomes and Requires More Therapy." Pediatrics 119:19-28.
-
(2007)
Pediatrics
, vol.119
, pp. 19-28
-
-
Sims, E.J.1
Clark, A.2
McCormick, J.3
Mehta, G.4
Connett, G.5
Mehta, A.6
-
259
-
-
0142031147
-
Screening for fragile X syndrome: Parent attitudes and perspectives
-
Skinner, D., K. Sparkman, and D. Bailey. 2003. "Screening for Fragile X Syndrome: Parent Attitudes and Perspectives." Genetics in Medicine 55:378-384.
-
(2003)
Genetics in Medicine
, vol.55
, pp. 378-384
-
-
Skinner, D.1
Sparkman, K.2
Bailey, D.3
-
260
-
-
65549133401
-
Media coverage of celebrity DUIs: Teachable moments or problematic social modeling?
-
Smith, K. C., D. Twum, and A. C. Gielen. 2009. "Media Coverage of Celebrity DUIs: Teachable Moments or Problematic Social Modeling?" Alcohol and Alcoholism 44:256-260.
-
(2009)
Alcohol and Alcoholism
, vol.44
, pp. 256-260
-
-
Smith, K.C.1
Twum, D.2
Gielen, A.C.3
-
261
-
-
84906447205
-
State urged to test babies for more disorders
-
February 14
-
Somerson, M. D. 2000. "State Urged to Test Babies for More Disorders." Columbus Dispatch (Ohio). February 14.
-
(2000)
Columbus Dispatch (Ohio)
-
-
Somerson, M.D.1
-
262
-
-
2542422173
-
Newborn screening for cystic fibrosis: The practical implications
-
Southern, K. W. 2004. "Newborn Screening for Cystic Fibrosis: The Practical Implications." Journal of the Royal Society of Medicine 97, Suppl. 44:57-59.
-
(2004)
Journal of the Royal Society of Medicine
, vol.97
, Issue.SUPPL. 44
, pp. 57-59
-
-
Southern, K.W.1
-
263
-
-
0009342593
-
The power of lay knowledge
-
ed. J. Popay and G. Williams, London: Routledge
-
Stacey, M. 1994. "The Power of Lay Knowledge." In Researching the People's Health, ed. J. Popay and G. Williams, 85-98. London: Routledge.
-
(1994)
Researching the People's Health
, pp. 85-98
-
-
Stacey, M.1
-
267
-
-
79960193496
-
Some samples are stored and used for research without parents' consent
-
June 30
-
Stein, R. 2009. "Some Samples Are Stored and Used for Research without Parents' Consent." Washington Post. June 30.
-
(2009)
Washington Post
-
-
Stein, R.1
-
269
-
-
33744802933
-
Naming and counting disorders (conditions) included in newborn screening panels
-
Sweetman, L., D. S. Millington, B. L. Therrell, W. Hannon, B. Popovich, M. S. Watson, M. Y. Mann, M. A. Lloyd-Puryear, and P. C. van Dyck. 2006. "Naming and Counting Disorders (Conditions) Included in Newborn Screening Panels." Pediatrics 117:S308-S314.
-
(2006)
Pediatrics
, vol.117
-
-
Sweetman, L.1
Millington, D.S.2
Therrell, B.L.3
Hannon, W.4
Popovich, B.5
Watson, M.S.6
Mann, M.Y.7
Lloyd-Puryear, M.A.8
Van Dyck, P.C.9
-
271
-
-
84906451252
-
-
Brookline, Mass.: Brookline Books
-
Taner-Leff, P., and E. H. Walizer. 1992. Building the Healing Partnership: Parents, Professionals, and Children with Chronic Illnesses and Disabilities. Brookline, Mass.: Brookline Books.
-
(1992)
Building the Healing Partnership: Parents, Professionals, and Children with Chronic Illnesses and Disabilities
-
-
Taner-Leff, P.1
Walizer, E.H.2
-
272
-
-
39749171742
-
Waiving informed consent in newborn screening research: Balancing social value and respect
-
Tarini, B. A., W. Burke, C. R. Scott, and B. S. Wilfond. 2008. "Waiving Informed Consent in Newborn Screening Research: Balancing Social Value and Respect." American Journal of Medical Genetics. Part C, Seminars in Medical Genetics 148 C: 23-30.
-
(2008)
American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
, vol.148 C
, pp. 23-30
-
-
Tarini, B.A.1
Burke, W.2
Scott, C.R.3
Wilfond, B.S.4
-
273
-
-
33748435678
-
State newborn screening in the tandem mass spectrometry era: More tests, more false-positive results
-
Tarini, B. A., D. A. Christakis, and H. G. Welch. 2006. "State Newborn Screening in the Tandem Mass Spectrometry Era: More Tests, More False-Positive Results." Pediatrics 118:448-456.
-
(2006)
Pediatrics
, vol.118
, pp. 448-456
-
-
Tarini, B.A.1
Christakis, D.A.2
Welch, H.G.3
-
274
-
-
70349260949
-
Parents' interest in predictive genetic testing for their children when a disease has no treatment
-
Tarini, B. A., D. Singer, S. Clark, and M. Davis. 2009. "Parents' Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment." Pediatrics 124:e432-e438.
-
(2009)
Pediatrics
, vol.124
-
-
Tarini, B.A.1
Singer, D.2
Clark, S.3
Davis, M.4
-
275
-
-
57649195915
-
Problems assessing uptake of huntington disease predictive testing and a proposed solution
-
Tassicker, R. J., B. Teltscher, M. K. Trembath, V. Collins, L. J. Sheffield, E. Chiu, L. Gurrin, and M. B. Delatycki. 2009. "Problems Assessing Uptake of Huntington Disease Predictive Testing and a Proposed Solution. " European Journal of Human Genetics 1:66-70.
-
(2009)
European Journal of Human Genetics
, vol.1
, pp. 66-70
-
-
Tassicker, R.J.1
Teltscher, B.2
Trembath, M.K.3
Collins, V.4
Sheffield, L.J.5
Chiu, E.6
Gurrin, L.7
Delatycki, M.B.8
-
278
-
-
0034794064
-
U. S. newborn screening policy dilemmas for the twenty-first century
-
Therrell, B. 2001. "U. S. Newborn Screening Policy Dilemmas for the Twenty-first Century." Molecular Genetics and Metabolism 74:64-74.
-
(2001)
Molecular Genetics and Metabolism
, vol.74
, pp. 64-74
-
-
Therrell, B.1
-
279
-
-
33847683050
-
Predictive testing for Huntington's disease
-
Tibbena, A. 2007. "Predictive Testing for Huntington's Disease." Brain Research Bulletin 72:165-171.
-
(2007)
Brain Research Bulletin
, vol.72
, pp. 165-171
-
-
Tibbena, A.1
-
280
-
-
27744538134
-
Psychosocial risk associated with newborn screening for cystic fibrosis: Parents' experience while awaiting the sweat-test appointment
-
Tluczek, A., R. L. Koscik, P. M. Farrell, and M. J. Rock. 2005. "Psychosocial Risk Associated with Newborn Screening for Cystic Fibrosis: Parents' Experience While Awaiting the Sweat-Test Appointment." Pediatrics 115:1692-1703.
-
(2005)
Pediatrics
, vol.115
, pp. 1692-1703
-
-
Tluczek, A.1
Koscik, R.L.2
Farrell, P.M.3
Rock, M.J.4
-
281
-
-
33744766154
-
Patient as a policy factor: A historical case study of the patient/survivor movement in mental health
-
Tomes, N. 2006. "Patient as a Policy Factor: A Historical Case Study of the Patient/Survivor Movement in Mental Health." Health Affairs 25:720-729.
-
(2006)
Health Affairs
, vol.25
, pp. 720-729
-
-
Tomes, N.1
-
282
-
-
33847125699
-
Patient empowerment and the dilemmas of late-modern medicalisation
-
-. 2007. "Patient Empowerment and the Dilemmas of Late-Modern Medicalisation. " Lancet 369:698-700.
-
(2007)
Lancet
, vol.369
, pp. 698-700
-
-
Tomes, N.1
-
283
-
-
84905150381
-
Newborn test program boosted
-
December 14
-
Urban, P. 2007. "Newborn Test Program Boosted." Connecticut Post Online. December 14. www. LexisNexis.com/hottopics/lnacademic.
-
(2007)
Connecticut Post Online
-
-
Urban, P.1
-
286
-
-
0344081182
-
Effect of expanded newborn screening for biochemical genetic disorders on child outcomes and parental stress
-
Waisbren, S. E., S. Albers, S. Amato, M. Ampola, T. G. Brewster, L. Demmer, R. B. Eaton, R. Greenstein, M. Korson, and C. Larson. 2003. "Effect of Expanded Newborn Screening for Biochemical Genetic Disorders on Child Outcomes and Parental Stress." JAMA 290:2564-2574.
-
(2003)
JAMA
, vol.290
, pp. 2564-2574
-
-
Waisbren, S.E.1
Albers, S.2
Amato, S.3
Ampola, M.4
Brewster, T.G.5
Demmer, L.6
Eaton, R.B.7
Greenstein, R.8
Korson, M.9
Larson, C.10
-
287
-
-
33947175498
-
Neonatal screening: Old dogma or sound principle?
-
Wald, N. 2007. "Neonatal Screening: Old Dogma or Sound Principle?" Pediatrics 119:406-407.
-
(2007)
Pediatrics
, vol.119
, pp. 406-407
-
-
Wald, N.1
-
288
-
-
33846015384
-
Parents prod states to boost newborn testing
-
July 30
-
Waldholz, M. 2004. "Parents Prod States to Boost Newborn Testing." Wall Street Journal. July 30.
-
(2004)
Wall Street Journal
-
-
Waldholz, M.1
-
289
-
-
84906439592
-
Thinking media advocacy
-
ed. L. Wallack, L. Dorfman, D. Jenigan, and M. Themba-Nixon, Newbury Park, Calif.: Sage Publications
-
Wallack, L., L. Dorfman, D. Jernigan, and M. Themba-Nixon. 1993. "Thinking Media Advocacy." In Media Advocacy and Public Health, ed. L. Wallack, L. Dorfman, D. Jenigan, and M. Themba-Nixon, 86-120. Newbury Park, Calif.: Sage Publications.
-
(1993)
Media Advocacy and Public Health
, pp. 86-120
-
-
Wallack, L.1
Dorfman, L.2
Jernigan, D.3
Themba-Nixon, M.4
-
290
-
-
0020041224
-
Newborn screening for hemoglobinopathies in New York state: Experience of physicians and parents of affected children
-
Warren, N. S., T. P. Carter, J. R. Humbert, and P. T. Rowley. 1982. "Newborn Screening for Hemoglobinopathies in New York State: Experience of Physicians and Parents of Affected Children. " Journal of Pediatrics 100:373-377.
-
(1982)
Journal of Pediatrics
, vol.100
, pp. 373-377
-
-
Warren, N.S.1
Carter, T.P.2
Humbert, J.R.3
Rowley, P.T.4
-
291
-
-
33846017336
-
Current status of newborn screening: Decision-making about the conditions to include in screening programs
-
Watson, M. S. 2006. "Current Status of Newborn Screening: Decision-Making about the Conditions to Include in Screening Programs." Mental Retardation and Developmental Disabilities Research Reviews 12:230-235.
-
(2006)
Mental Retardation and Developmental Disabilities Research Reviews
, vol.12
, pp. 230-235
-
-
Watson, M.S.1
-
292
-
-
33744784588
-
Newborn screening: Toward a uniform screening panel and system-executive summary
-
American College of Medical Genetics Newborn Screening Expert Group
-
Watson, M. S., M. Y. Mann, M. A. Lloyd-Puryear, P. Rinaldo, R. R. Howell, and American College of Medical Genetics Newborn Screening Expert Group. 2006. "Newborn Screening: Toward a Uniform Screening Panel and System-Executive Summary." Pediatrics 117:S296-S307.
-
(2006)
Pediatrics
, vol.117
-
-
Watson, M.S.1
Mann, M.Y.2
Lloyd-Puryear, M.A.3
Rinaldo, P.4
Howell, R.R.5
-
294
-
-
0012543880
-
Consumer and community participation: A reassessment of process, impact, and value
-
ed. G. Albrecht, R. Fitzpatrick, and S. Scrimshaw. Thousand Oaks, Calif.: Sage Publications
-
White, D. 2000. "Consumer and Community Participation: A Reassessment of Process, Impact, and Value." In The Handbook of Social Studies in Health and Medicine, ed. G. Albrecht, R. Fitzpatrick, and S. Scrimshaw. Thousand Oaks, Calif.: Sage Publications.
-
(2000)
The Handbook of Social Studies in Health and Medicine
-
-
White, D.1
-
296
-
-
77950346028
-
Public accountability of newborn screening: Collective knowing and deciding
-
Wieser, B. 2010. "Public Accountability of Newborn Screening: Collective Knowing and Deciding." Social Science and Medicine 70:926-933.
-
(2010)
Social Science and Medicine
, vol.70
, pp. 926-933
-
-
Wieser, B.1
-
297
-
-
0347320491
-
Ethical issues in newborn screening and the impact of new technologies
-
Wilcken, B. 2003. "Ethical Issues in Newborn Screening and the Impact of New Technologies." European Journal of Pediatrics 162:S62-S66.
-
(2003)
European Journal of Pediatrics
, vol.162
-
-
Wilcken, B.1
-
298
-
-
0037685217
-
Screening newborns for inborn errors of metabolism by tandem mass spectrometry
-
Wilcken, B., V. Wiley, J. Hammond, and K. Carpenter. 2003. "Screening Newborns for Inborn Errors of Metabolism by Tandem Mass Spectrometry." New England Journal of Medicine 348:2304-2312.
-
(2003)
New England Journal of Medicine
, vol.348
, pp. 2304-2312
-
-
Wilcken, B.1
Wiley, V.2
Hammond, J.3
Carpenter, K.4
-
299
-
-
79958791643
-
Lay knowledge: The missing middle of the expertise debates
-
ed. R. Harris, N. Wathen, and S. Wyatt, Hampshire, U. K.: Palgrave Macmillan
-
Wilcox, S. 2010. "Lay Knowledge: the Missing Middle of the Expertise Debates." In Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility, ed. R. Harris, N. Wathen, and S. Wyatt, 45-64. Hampshire, U. K.: Palgrave Macmillan.
-
(2010)
Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility
, pp. 45-64
-
-
Wilcox, S.1
-
300
-
-
0029298011
-
Screening policy for cystic fibrosis: The role of evidence
-
Wilfond, B. S. 1995. "Screening Policy for Cystic Fibrosis: The Role of Evidence." Hastings Center Report 25:S21-S24.
-
(1995)
Hastings Center Report
, vol.25
-
-
Wilfond, B.S.1
-
301
-
-
25844516484
-
Balancing benefits and risks for cystic fibrosis newborn screening: Implications for policy decisions
-
Wilfond, B. S., R. B. Parad, and N. Fost. 2005. "Balancing Benefits and Risks for Cystic Fibrosis Newborn Screening: Implications for Policy Decisions." Journal of Pediatrics 147, 3 Suppl.: S109-S113.
-
(2005)
Journal of Pediatrics
, vol.147
, Issue.3 SUPPL.
-
-
Wilfond, B.S.1
Parad, R.B.2
Fost, N.3
-
303
-
-
54049151522
-
-
World Health Organization WHO, Report of a joint WHO/ICF M A/ECFS/ECFTN Meeting. June, Stockholm, Sweden
-
World Health Organization [WHO]. 2000. Classification of Cystic Fibrosis and Related Disorders. Report of a joint WHO/ICF (M) A/ECFS/ECFTN Meeting. June, Stockholm, Sweden.
-
(2000)
Classification of Cystic Fibrosis and Related Disorders
-
-
-
305
-
-
0002068543
-
Do young children need intellectual stimulation? Experts' advice to parents, 1900-1985
-
Wrigley, J. 1989. "Do Young Children Need Intellectual Stimulation? Experts' Advice to Parents, 1900-1985." History of Education Quarterly 29:41-75.
-
(1989)
History of Education Quarterly
, vol.29
, pp. 41-75
-
-
Wrigley, J.1
-
307
-
-
57749083529
-
Persistent maternal anxiety affects the interaction between mothers and their very low birthweight children at 24 months
-
Zelkowitz, P., A. Papageorgiou, C. Bardin, and T. Wang. 2009. "Persistent Maternal Anxiety Affects the Interaction between Mothers and Their Very Low Birthweight Children at 24 Months." Early Human Development 85:51-58.
-
(2009)
Early Human Development
, vol.85
, pp. 51-58
-
-
Zelkowitz, P.1
Papageorgiou, A.2
Bardin, C.3
Wang, T.4
|