-
1
-
-
33846118827
-
Testing fate. A drop of blood saves one baby. Another falls Ill
-
June 17
-
Michael Waldholz, "Testing Fate. A Drop of Blood Saves One Baby. Another Falls Ill." Wall Street Journal, June 17, 2004.
-
(2004)
Wall Street Journal
-
-
Waldholz, M.1
-
2
-
-
16244371025
-
Panel to advise tests on babies for 29 diseases
-
February 21
-
Gina Kolata, "Panel to Advise Tests on Babies for 29 Diseases, " New York Times, February 21, 2005.
-
(2005)
New York Times
-
-
Kolata, G.1
-
3
-
-
0034716499
-
Big gap in screening U.S. Infants for hereditary ills
-
February 26
-
Carey Goldberg, "Big Gap in Screening U.S. Infants for Hereditary Ills, " New York Times, February 26, 2000.
-
(2000)
New York Times
-
-
Goldberg, C.1
-
4
-
-
84957768626
-
Patients or health-care consumers? Why the history of contested terms matters
-
ed. Rosemary Stevens, Charles Rosenberg, and Lawton Burns (New Brunswick, N.J.: Rutgers University Press)
-
Nancy Tomes, "Patients or Health-Care Consumers? Why the History of Contested Terms Matters, " in History and Health Policy in the United States: Putting the Past Back, ed. Rosemary Stevens, Charles Rosenberg, and Lawton Burns (New Brunswick, N.J.: Rutgers University Press, 2006), 83-110.
-
(2006)
History and Health Policy in the United States: Putting the Past Back
, pp. 83-110
-
-
Tomes, N.1
-
5
-
-
0031914875
-
Community representatives: Representing the community?
-
Rachel Jewkes and Anne Murcott, "Community Representatives: Representing the Community?" Social Science Medicine 46, 7 (1998): 843-858.
-
(1998)
Social Science Medicine
, vol.46
, Issue.7
, pp. 843-858
-
-
Jewkes, R.1
Murcott, A.2
-
6
-
-
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], "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, no. 2 (2000): 389-427.
-
(2000)
Pediatrics
, vol.106
, Issue.2
, pp. 389-427
-
-
-
7
-
-
0026840242
-
Symposium: Legal and ethical issues raised by human genome project, screening, and treatment of newborns
-
Ellen W. Clayton, "Symposium: Legal and Ethical Issues Raised by Human Genome Project, Screening, and Treatment of Newborns, " Houston Law Review 29 (1992): 85-148.
-
(1992)
Houston Law Review
, vol.29
, pp. 85-148
-
-
Clayton, E.W.1
-
8
-
-
0033278265
-
Contesting consent: The challenge to compulsory neonatal screening for PKU
-
Diane Paul, "Contesting Consent: The Challenge to Compulsory Neonatal Screening for PKU, " Perspectives in Biology and Medicine 42, 2 (1999): 207.
-
(1999)
Perspectives in Biology and Medicine
, vol.42
, Issue.2
, pp. 207
-
-
Paul, D.1
-
9
-
-
0141794232
-
ACOG committee opinion no. 287, October: Newborn screening
-
American College of Obstetricians and Gynecologists [ACOG]
-
American College of Obstetricians and Gynecologists [ACOG], "ACOG Committee Opinion No. 287, October: Newborn Screening, " Obstetrics and Gynecology 102, 4 (2003): 887-889.
-
(2003)
Obstetrics and Gynecology
, vol.102
, Issue.4
, pp. 887-889
-
-
-
10
-
-
11344287919
-
Community involvement in developing policies for genetic testing: Assessing the interests and experiences of individuals affected by genetic conditions
-
Sarah E. Gollust, Barbara P. Fuller, Paul S. Miller, and Barbara Biesecker, "Community Involvement in Developing Policies for Genetic Testing: Assessing the Interests and Experiences of Individuals Affected by Genetic Conditions, " Health Policy and Ethics 95, 1 (2005): 35.
-
(2005)
Health Policy and Ethics
, vol.95
, Issue.1
, pp. 35
-
-
Gollust, S.E.1
Fuller, B.P.2
Miller, P.S.3
Biesecker, B.4
-
11
-
-
33745321363
-
Practices and perceptions of long- Term follow-up among state newborn screening programs
-
Timothy Hoff and Adrienne Hoyt, "Practices and Perceptions of Long-Term Follow-up among State Newborn Screening Programs, " Pediatrics 117, 6 (2006): 922-929.
-
(2006)
Pediatrics
, vol.117
, Issue.6
, pp. 922-929
-
-
Hoff, T.1
Hoyt, A.2
-
12
-
-
33744786549
-
Status of newborn screening programs in the United States
-
Bradford Therrell, Alissa Johnson, and Donna Williams, "Status of Newborn Screening Programs in the United States, " Pediatrics 117, 5 (2006): S212-S252.
-
(2006)
Pediatrics
, vol.117
, Issue.5
-
-
Therrell, B.1
Johnson, A.2
Williams, D.3
-
13
-
-
84905150396
-
-
accessed May 31, 2007
-
http:genes-r-us.uthscsa.edu/accessed May 31, 2007.
-
-
-
-
14
-
-
84905150389
-
State will expand tests that find defects in newborns
-
October 8
-
A Baker, "State Will Expand Tests That Find Defects in Newborns, " New York Times, October 8, 2004.
-
(2004)
New York Times
-
-
Baker, A.1
-
15
-
-
0347320491
-
Ethical issues in newborn screening and the impact of new technologies
-
Bridget Wilcken, "Ethical Issues in Newborn Screening and the Impact of New Technologies, " European Journal of Pediatrics 162, 1 (2003): S62-s66.
-
(2003)
European Journal of Pediatrics
, vol.162
, Issue.1
-
-
Wilcken, B.1
-
16
-
-
33747591403
-
Newborn screening: Toward a uniform screening panel and system
-
May
-
American College of Medical Genetics [ACMG], "Newborn Screening: Toward a Uniform Screening Panel and System, " Genetics Medicine 8, 5 (May 2006), http://www.acmg.net/resources/policies/NBS/NBS-Exec-Sum.pdf.
-
(2006)
Genetics Medicine
, vol.8
, Issue.5
-
-
-
17
-
-
33646853843
-
Newborn screening technology: Proceed with caution
-
Jeffrey Botkin, Ellen W. Clayton, Norman Fost, Wylie Burke, Thomas Murray, Mary A. Baily, Benjamin Wilfond, Alfred Berg, and Lainie Friedman Ross, "Newborn Screening Technology: Proceed with Caution, " Pediatrics 117 (2006): 1793-1799.
-
(2006)
Pediatrics
, vol.117
, pp. 1793-1799
-
-
Botkin, J.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
-
18
-
-
0023474883
-
Health education, public policy, and disease prevention: A case history of the New York City coalition to end lead poisoning
-
Nicholas Freudenberg and Maxine Golub, "Health Education, Public Policy, and Disease Prevention: A Case History of the New York City Coalition to End Lead Poisoning, " Health Education Quarterly 14, 4 (1987): 387-388.
-
(1987)
Health Education Quarterly
, vol.14
, Issue.4
, pp. 387-388
-
-
Freudenberg, N.1
Golub, M.2
-
19
-
-
84905153502
-
Parent advocacy in FAS public policy change
-
ed. Ann Steissguth and Jonathon Kanter (Seattle: University of Washington Press)
-
Jocie De Vries and Ann Waller, "Parent Advocacy in FAS Public Policy Change, " in Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities, ed. Ann Steissguth and Jonathon Kanter (Seattle: University of Washington Press, 1997), 171-180.
-
(1997)
Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities
, pp. 171-180
-
-
De Vries, J.1
Waller, A.2
-
20
-
-
0036240617
-
Educational advocacy for children with autism
-
James A. Mulick and Eric M. Butter, "Educational Advocacy for Children with Autism, " Behavioral Interventions 17 (2002): 57-74.
-
(2002)
Behavioral Interventions
, vol.17
, pp. 57-74
-
-
Mulick, J.A.1
Butter, E.M.2
-
22
-
-
84906427178
-
A fighting chance
-
April 25
-
Sharon Wynne, "A Fighting Chance, " St. Petersburg Times, April 25, 2006.
-
(2006)
St. Petersburg Times
-
-
Wynne, S.1
-
23
-
-
35348973110
-
Risk as moral danger: The social and political functions of risk discourse in public health
-
ed. Peter Conrad (New York: Worth)
-
Deborah Lupton, "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. Peter Conrad (New York: Worth, 2001).
-
(2001)
The Sociology of Health and Illness: Critical Perspectives
-
-
Lupton, D.1
-
25
-
-
0030341936
-
The social dynamics of genetic testing: The case of fragile X
-
Dorothy Nelkin, "The Social Dynamics of Genetic Testing: The Case of Fragile X, " Medical Anthropology Quarterly 10, 4 (1996): 537-550.
-
(1996)
Medical Anthropology Quarterly
, vol.10
, Issue.4
, pp. 537-550
-
-
Nelkin, D.1
-
27
-
-
0032601588
-
Public advocacy and allocation of federal funds for biomedical research
-
Rebecca Dresser, "Public Advocacy and Allocation of Federal Funds for Biomedical Research, " Milbank Quarterly 77, 2 (1999): 257-274.
-
(1999)
Milbank Quarterly
, vol.77
, Issue.2
, pp. 257-274
-
-
Dresser, R.1
-
31
-
-
84972048113
-
In search of the issue- Attention cycle
-
B. Guy Peters and Brian W. Hogwood, " In Search of the Issue-Attention Cycle, " Journal of Politics 47 (1985): 39-53.
-
(1985)
Journal of Politics
, vol.47
, pp. 39-53
-
-
Peters, B.G.1
Hogwood, B.W.2
-
32
-
-
84906478544
-
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, Cleveland, Ohio, May 1-3
-
Rachel Grob and Mark Schlesinger, "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, Ohio, May 1-3, 2008.
-
(2008)
Translating ELSI: Ethical, Legal, and Social Implications of Genomics Conference
-
-
Grob, R.1
Schlesinger, M.2
-
33
-
-
84905150393
-
State urged to test babies for more disorders
-
February 14
-
Mark Somerson, "State Urged to Test Babies for More Disorders, " Columbus (Ohio) Dispatch, February 14, 2000.
-
(2000)
Columbus (Ohio) Dispatch
-
-
Somerson, M.1
-
34
-
-
84906447215
-
Testing of newborns can be a lifesaver
-
letter to the editor, March 4
-
D. E. Dougherty, "Testing of Newborns Can Be a Lifesaver, " letter to the editor, Boston Globe, March 4, 2000.
-
(2000)
Boston Globe
-
-
Dougherty, D.E.1
-
35
-
-
44849139821
-
Expanding newborn screening: Process, policy, and priorities
-
Virginia Moyer, Ned Calonge, Steven Teutsch, and Jeffrey Botkin, "Expanding Newborn Screening: Process, Policy, and Priorities, " Hastings Center Report 38, 3 (2008): 32-39.
-
(2008)
Hastings Center Report
, vol.38
, Issue.3
, pp. 32-39
-
-
Moyer, V.1
Calonge, N.2
Teutsch, S.3
Botkin, J.4
-
37
-
-
84905150386
-
-
accessed May 2007
-
CARES Foundation, "Newborn Screening Advocacy, " http://www.caresfoundation.org/productcart/pc/advocacy-efforts-cah.html, accessed May 2007.
-
Newborn Screening Advocacy
-
-
-
39
-
-
0041321420
-
Parental attitudes regarding newborn screening of PKU and DMD
-
Elizabeth Campbell and Lainie F. Ross, "Parental Attitudes Regarding Newborn Screening of PKU and DMD, " American Journal of Medical Genetics 120A (2003): 209-214.
-
(2003)
American Journal of Medical Genetics
, vol.120 A
, pp. 209-214
-
-
Campbell, E.1
Ross, L.F.2
-
40
-
-
0029367785
-
The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials
-
Steven Epstein, "The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials, " Science, Technology, and Human Values 20, 4 (1995).
-
(1995)
Science, Technology, and Human Values
, vol.20
, Issue.4
-
-
Epstein, S.1
-
45
-
-
33846043092
-
A simple test could have saved Ben's life: Haygood family and others pushing for expansion of newborn screening
-
August 2
-
Susan Schindehette, "A Simple Test Could Have Saved Ben's Life: Haygood Family and Others Pushing for Expansion of Newborn Screening, " People, August 2, 2004, 107-108.
-
(2004)
People
, pp. 107-108
-
-
Schindehette, S.1
-
47
-
-
84905150388
-
Diseases added to infant testing. Cost of screening increases to $89.25
-
November 3
-
Neil Smith, "Diseases Added to Infant Testing. Cost of Screening Increases to $89.25, " Arkansas Democrat Gazette, November 3, 2007.
-
(2007)
Arkansas Democrat Gazette
-
-
Smith, N.1
-
48
-
-
84905150379
-
Couple to appeal blood test order
-
December 19
-
Todd Cooper, "Couple to Appeal Blood Test Order, " Omaha World Herald, December 19, 2003.
-
(2003)
Omaha World Herald
-
-
Cooper, T.1
-
49
-
-
84905150380
-
Georgia is behind on newborn tests
-
July 12
-
Patricia Guthrie, "Georgia Is Behind on Newborn Tests, " Atlanta Journal-Constitution, July 12, 2005.
-
(2005)
Atlanta Journal-Constitution
-
-
Guthrie, P.1
-
50
-
-
35048886973
-
In turnabout, infant deaths climb in south
-
April 27
-
Erik Eckholm, "In Turnabout, Infant Deaths Climb in South, " New York Times, April 27, 2007.
-
(2007)
New York Times
-
-
Eckholm, E.1
-
51
-
-
84905150381
-
Newborn screening program boosted
-
local, December 14
-
Peter Urban, "Newborn Screening Program Boosted, " Connecticut Post Online (local), December 14, 2007.
-
(2007)
Connecticut Post Online
-
-
Urban, P.1
-
52
-
-
84905150382
-
Newborns at risk: How Georgia's health screening practices can put newborns at risk
-
Feb. 2
-
Andy Miller and Patricia Guthrie, "Newborns at Risk: How Georgia's Health Screening Practices Can Put Newborns at Risk, " Atlanta Journal-Constitution, Feb. 2, 2003.
-
(2003)
Atlanta Journal-Constitution
-
-
Miller, A.1
Guthrie, P.2
-
53
-
-
84905150383
-
-
accessed February 20, 2010
-
http://www.mchb.hrsa.gov/programs/genetics/presentations/comments/Monaco. htm, accessed February 20, 2010.
-
-
-
-
54
-
-
33847125699
-
Patient empowerment and the dilemmas of late-modern medicalisation
-
Nancy Tomes, "Patient Empowerment and the Dilemmas of Late-Modern Medicalisation, " Lancet 369 (2007): 698-700.
-
(2007)
Lancet
, vol.369
, pp. 698-700
-
-
Tomes, N.1
-
55
-
-
0012543880
-
Consumer and community participation: A reassessment of process, impact, and value
-
ed. Gary Albrecht, Ray Fitzpatrick, and Susan Scrimshaw Thousand Oaks, Calif.: Sage
-
Deena White, "Consumer and Community Participation: A Reassessment of Process, Impact, and Value" in The Handbook of Social Studies in Health and Medicine, ed. Gary Albrecht, Ray Fitzpatrick, and Susan Scrimshaw Thousand Oaks, Calif.: Sage, 2000.
-
(2000)
The Handbook of Social Studies in Health and Medicine
-
-
White, D.1
-
56
-
-
44849114298
-
Ethics, evidence, and cost in newborn screening
-
Mary A. Baily and Thomas Murray, "Ethics, Evidence, and Cost in Newborn Screening, " Hastings Center Report 38, 3 (2008): 23-31.
-
(2008)
Hastings Center Report
, vol.38
, Issue.3
, pp. 23-31
-
-
Baily, M.A.1
Murray, T.2
-
57
-
-
84905150384
-
-
http://dodd.senate.gov/index.php?q=node/3274&pr=press/Speeches/ 107-02/0614.htm.
-
-
-
-
58
-
-
84905150373
-
-
Nov. 10
-
"Five Drops of Blood: Invasion of Privacy, " Star Tribune, Nov. 10, 2007, http://www.startribune.com/lifestyle/health/11345741.html.
-
(2007)
Five Drops of Blood: Invasion of Privacy
-
-
-
59
-
-
0035220355
-
Using and misusing anecdote in policy making
-
John E. McDonough, "Using and Misusing Anecdote in Policy Making, " Health Affairs 20, 1 (2001): 207-212.
-
(2001)
Health Affairs
, vol.20
, Issue.1
, pp. 207-212
-
-
McDonough, J.E.1
-
62
-
-
33744792339
-
Recommendations for effective newborn screening communication: Results of focus groups with parents, providers, and experts
-
Terry Davis, Sharon Humiston, Connie Arnold, Joseph Bocchini, Pat Bass, Estella Kennen, Anna Bocchini, Donna Williams, Penny Kyler, and Michelle Lloyd-Puryear, "Recommendations for Effective Newborn Screening Communication: Results of Focus Groups with Parents, Providers, and Experts, " Pediatrics 117 (2006): 326-340.
-
(2006)
Pediatrics
, vol.117
, pp. 326-340
-
-
Davis, T.1
Humiston, S.2
Arnold, C.3
Bocchini, J.4
Bass, P.5
Kennen, E.6
Bocchini, A.7
Williams, D.8
Kyler, P.9
Lloyd-Puryear, M.10
-
63
-
-
12344306026
-
Lullabies for sophia
-
Jennifer Rosner, "Lullabies for Sophia, " Hastings Center Report 34, 6 (2004): 21.
-
(2004)
Hastings Center Report
, vol.34
, Issue.6
, pp. 21
-
-
Rosner, J.1
-
64
-
-
33748551013
-
Parenting in the genomic age: The cursed blessing of newborn screening
-
Rachel Grob, "Parenting in the Genomic Age: The Cursed Blessing of Newborn Screening, " New Genetics and Society 25, 2 (2006): 159-170.
-
(2006)
New Genetics and Society
, vol.25
, Issue.2
, pp. 159-170
-
-
Grob, R.1
-
65
-
-
48949093822
-
Is my sick child healthy? Is my healthy child sick? Changing parental experiences of cystic fibrosis in the age of expanded newborn screening
-
Rachel Grob, "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, 7 (2008): 1056-1064.
-
(2008)
Social Science and Medicine
, vol.67
, Issue.7
, pp. 1056-1064
-
-
Grob, R.1
-
66
-
-
0842311566
-
Maternal anxiety associated with newborn genetic screening for type 1 diabetes
-
Suzanne Bennett Johnson, Jin-Xion She, Amy Baughcum, Desmond Schatz, and Stacy Carmichael, "Maternal Anxiety Associated with Newborn Genetic Screening for Type 1 Diabetes, " Diabetes Care 27, 2 (2004): 392-397.
-
(2004)
Diabetes Care
, vol.27
, Issue.2
, pp. 392-397
-
-
Johnson, S.B.1
She, J.-X.2
Baughcum, A.3
Schatz, D.4
Carmichael, S.5
-
67
-
-
0344081182
-
Effect of expanded newborn screening for biochemical genetic disorders on child outcomes and parental stress
-
Susan E. Waisbren, Simone Albers, Steve Amato, Mary Ampola, Thomas G. Brewster, Laurie Demmer, Roger B. Eaton, Robert Greenstein, Mark Korson, Cecilia Larson et al., "Effect of Expanded Newborn Screening for Biochemical Genetic Disorders on Child Outcomes and Parental Stress, " JAMA 290, 19 (2003): 2606-2608.
-
(2003)
JAMA
, vol.290
, Issue.19
, pp. 2606-2608
-
-
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
-
69
-
-
84905150375
-
Bringing the patient back in: Health policy history from the bottom up
-
Presentation, Charlottesville, Va. June 1
-
Beatrix Hoffman, "Bringing the Patient Back In: Health Policy History from the Bottom Up." Presentation at the Policy History Conference, Charlottesville, Va., June 1, 2006.
-
(2006)
The Policy History Conference
-
-
Hoffman, B.1
-
70
-
-
0004327065
-
-
trans. Constance Garnett (New York: Signet Classic)
-
Fyodor Dostoevsky, The Brothers Karamazov, trans. Constance Garnett (New York: Signet Classic, 1957), 226.
-
(1957)
The Brothers Karamazov
, pp. 226
-
-
Dostoevsky, F.1
-
71
-
-
26944483028
-
Genetic literacy and citizenship: Possibilities for deliberative democratic policymaking in science and medicine
-
Bruce Jennings, "Genetic Literacy and Citizenship: Possibilities for Deliberative Democratic Policymaking in Science and Medicine, " Good Society 13, 1 (2004): 38-44.
-
(2004)
Good Society
, vol.13
, Issue.1
, pp. 38-44
-
-
Jennings, B.1
|