ELSI Funded Principal Investigators

1. Anderson, Gwen
   Division of Social Science Ethics and Law, Eunice Kennedy Shriver Center
   NIH Grant Title: Genetics in Nursing Literature and Continuing Education
   
   
2. Andrews, Lori B.
   Chicago-Kent College of Law Illinois Institute of Technology
   NIH Grant Title: Conceptual Frameworks for Genetics Policy
   
   
3. Arar, Nedal
   Cellular and Structural Biology
   San Antonio, Texas
   NIH Grant Title: Beliefs and Attitudes Towards Hereditary Prostate Cancer
   
   
4. Aronowitz, Robert
   Cooper Hospital/University Medical Center
   NIH Grant Title: History of Breast Cancer Risk, 1900-Present
   
   
5. Asch, David A.
   Center for Bioethics, School of Medicine, University of Pennsylvania
   NIH Grant Title: How Much Information about the Risk of Cystic Fibrosis Do Couples Want to Know?
   NIH Grant Title: Prescriptive Decision Modeling for Cystic Fibrosis Screening
   
   
6. Bassett, Susan
   Johns Hopkins Univ School of Medicine
   NIH Grant Title: Perceptions of Risk and Genetic Testing for AD
   
   
7. Biesecker, Barbara Bowles
   National Society of Genetic Counselors (NSGC)
   NIH Grant Title: A Conference on Human Genome Research Implications
   Medical Genetics Branch, NCHGR
   NIH Grant Title: Outcomes of Education and Counseling for BRCA1 Testing
   
   
8. Blumenthal, David
   Massachusetts General Hospital
   NIH Grant Title: Academic-Industry Relationships in Genetics
   NIH Grant Title: Data-Sharing and Data-Withholding in Genetics Research
   
   
9. Botkin, Jeffrey R.
   Department of Pediatrics, University of Utah
   NIH Grant Title: Behavioral and Psychosocial Effects of BRCA1 Testing
   NIH Grant Title: Genetic Testing and Screening for Mental Health Disorders
   NIH Grant Title: Ensuring Confidentiality in the Publication of Pedigrees
   NIH Grant Title: Utah Center for Human Genome Research Genesis/ELSI Core (with Raymond F. Gesteland)
   
   
10. Bowen, Deborah (former PI: Wylie Burke)
    Fred Hutchinson Cancer Research Center
    NIH Grant Title: Counseling Strategies for Breast Cancer Risk
    NIH Grant Title: Counseling Strategies for Breast Cancer Risk
    
    
11. Brown, R. Steven
    The Council of State
    NIH Grant Title: Governments State Governments and the Human Genome Project
    
    
12. Browner, Carole H.
    Department of Psychiatry & Biobehavioral Sciences, UCLA School of Medicine
    NIH Grant Title: Use of Amniocentesis by Mexicans and Mexican Americans
    
    
13. Buchanan, Allen E.
    University of Wisconsin
    NIH Grant Title: The Human Genome Initiative and Limits of Ethical Theory
    
    
14. Bulger, Ruth
    National Academy of Sciences
    NIH Grant Title: Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders
    
    
15. Burhansstipanov, Linda
    Native American Cancer Initiatives, Inc
    NIH Grant Title: Genetic Education for Native Americans
    
    
16. Burke, Wylie
    University of Washington
    NIH Grant Title: Genetic Susceptibility Testing for Breast Cancer
    NIH Grant Title: Guiding Clinicians in Genetic Assessment of Cancer Risk
    
    
17. Burns, Joan and Mary Davidson
    Alliance of Genetic Support Groups
    NIH Grant Title: Partnership for Genetic Services
    
    
18. Callahan, Daniel
    The Hastings Center
    NIH Grant Title: Ethical Priorities in for Clinical Uses of Genome Research
    NIH Grant Title: The Genetic Prism: Understanding Health and Responsibility
    NIH Grant Title: Genetic Dilemmas in Primary Care: An Educational Program
    
    
19. Caplan, Arthur L.
    Center for Bioethics, University of Pennsylvania
    NIH Grant Title: Ethics, Values, Professional Responsibilities
    
    
20. Capron, Alexander M.
    University of Southern California Law School
    NIH Grant Title: Genome Mapping: Implications for Health and Life Insurance
    
    
21. Caskey, C. Thomas
    Baylor College of Medicine
    NIH Grant Title: National Study Conference on Genetics, Religion, and Ethics
    
    
22. Cassidy, Suzanne
    Case Western Reserve University
    NIH Grant Title: Novel Approaches to the Treatment of Genetic Disorders
    
    
23. Caumartin, Suzanne M.
    University of Michigan
    NIH Grant Title: Public Health Genetics: An Education Model.
    
    
24. Chedd, Graham
    WGBH Educational Foundation
    NIH Grant Title: The Secret of Life
    
    
25. Cho, Mildred
    Center for Bioethics, School of Medicine, University of Pennsylvania
    NIH Grant Title: BRCA1/2 Testing: Patient Uptake and Treatment Choices
    
    
26. Churchill, Larry R.
    University of North Carolina at Chapel Hill
    NIH Grant Title: Research, Treatment and Informed Consent in Gene Therapy
    
    
27. Citrin, Toby
    University of Michigan
    NIH Grant Title: Genome Technology & Reproduction - values & public policy
    
    
28. Clayton, Ellen Wright
    School of Law, Vanderbilt University Medical School
    NIH Grant Title: Families and Carrier Testing for Hemophilia A
    
    
29. Codori, Anne-Marie (former PI: Gloria Petersen)
    Johns Hopkins University
    NIH Grant Title: Gene Tests for Colon Cancer Risk: Psychosocial Studies
    
    
30. Coleman, Carl H.
    Health Research, Inc.
    NIH Grant Title: A Model for State Policy on Genetic Testing/Screening
    
    
31. Condit, Celeste M.
    University of Georgia
    NIH Grant Title: An Empirical Study of Change in Public Genetic Discourse"
    
    
32. Conrad, Peter
    Brandeis University
    NIH Grant Title: Genetics and Behavior in the News Media-1945-1995
    
    
33. Cowan, Ruth
    State University of New York
    NIH Grant Title: History of Prenatal Diagnosis
    
    
34. Mary Davidson (Joan Burns and)
    Alliance of Genetic Support Groups
    NIH Grant Title: Partnership for Genetic Services
    
    
35. Daly, Mary B.
    Fox Chase Cancer Center
    NIH Grant Title: Coping with Genetic Risk for Breast and Ovarian Cancer
    
    
36. Desnick, Robert J.
    Mount Sinai School of Medicine
    NIH Grant Title: Genetic Testing in the Ashkenazi Jewish Population
    
    
37. Duster,Troy S.
    Department of Sociology, University of California at Berkeley
    NIH Grant Title: Pathways to Genetic Screening: Patient Knowledge - Patient Practices
    
    
38. Elgin, Sarah
    Washington University
    NIH Grant Title: Two Units: Molecular Genetics and Environmental Chemistry"
    
    
39. Elias,Sherman
    Univ. of Tennessee and Boston University
    NIH Grant Title: Human Genome Workshop: Ethics, Law and Social Policy
    
    
40. Eunpu, Deborah
    Albert Einstein Medical Center
    NIH Grant Title: The Human Genome Project: a Public Forum
    
    
41. Faden, Ruth R.
    Department of Health Policy and Management, John Hopkins School of Hygiene
    NIH Grant Title: Confidentiality, Privacy & Insurance
    
    
42. Fader, Betsy
    Student Pugwash, USA
    NIH Grant Title: Visions for a Sustainable World: Science, Technology, and Social Responsibility
    
    
43. Fanos, Joanna
    California Pacific Medical Center
    NIH Grant Title: Perception of Carrier Status by Cystic Fibrosis Siblings
    
    
44. Fine, Beth A.
    Northwestern University
    NIH Grant Title: Genetic Counselors as Educators on Human Genome Issues
    
    
45. Fletcher, John C.
    University of Virginia
    NIH Grant Title: Preparing for the New Genetics: Education of Professionals
    
    
46. Flick, Bonnie
    Primary Children's Medical Center
    NIH Grant Title: Psychological Impact of Parental Genetic Testing on Adolescent Girls
    
    
47. Foster, Morris W.
    University of Oklahoma
    NIH Grant Title: ELSI Research in Two Native American Communities
    
    
48. Garber, Judy E.
    Dana-Farber Cancer Institute
    NIH Grant Title: A Predictive Testing Program for P53 Mutations in LFS
    NIH Grant Title: Dissemination of a BRCA1 Predisposition Testing Program
    
    
49. Geller, Gail
    Department of Pediatrics, Johns Hopkins University School of Medicine
    NIH Grant Title: Minors At-Risk ofFuture Disease: Their Role in Research
    NIH Grant Title: Prenatal Genetic Testing-Provider-Patient Communication
    NIH Grant Title: Publicizing Genetic Discoveries: The Impact of the Media
    NIH Grant Title: A Model Informed Consent Process for BRCA1 Testing
    
    
50. Gert, Bernard
    Department of Philosophy, Dartmouth College
    NIH Grant Title: Ethical and Legal Studies Relating to the Program to Map and Sequence The Human Genome
    
    
51. Gesteland, Raymond F. and Jeffery Botkin
    University of Utah
    NIH Grant Title: Utah Center for Human Genome Research Genesis/ELSI Core
    
    
52. Glanz, Karen
    University of Hawaii
    NIH Grant Title: Genetic Testing for Colon Cancer in Multiethnic Hawaii
    
    
53. Goldstein, Doris
    Georgetown University
    NIH Grant Title: Strategies for Documentation of Research on the Human Genome
    
    
54. Gostin, Lawrence
    Georgetown University
    NIH Grant Title: Genetics Legislation: Syntax, Science and Policy
    
    
55. Graber, Glenn
    Department of Philosophy , University of Tennessee, at Knoxville
    NIH Grant Title: Societal Impact of Human Genetic Engineering
    
    
56. Green, Michael J.
    Pennsylvania State University Hershey Medical Center
    NIH Grant Title: Breast Cancer Gene Education-Computer vs Practitioner
    
    
57. Green, Ronald M.
    Institute for the Study of Applied and Professional Ethics, Dartmouth College
    NIH Grant Title: Implications of Genome Research: A Model College Course
    
    
58. Gregg, Robin
    Shriver Center for Mental Retardation
    NIH Grant Title: Genetics, Ethics, and Choice: A Qualitative Study
    
    
59. Gribble, James
    Research Triangle Institute
    NIH Grant Title: Evaluating Informed Consent in BRCA1/2 Screening
    
    
60. Gritz, Ellen
    UTMD Anderson Cancer Center
    NIH Grant Title: Psychosocial Aspects of Genetic Testing for HNPCC
    
    
61. Grody, Wayne
    UCLA School of Medicine
    NIH Grant Title: Cystic Fibrosis Mutation Screening and Counseling
    
    
62. Guttmacher, Alan
    University of Vermont
    NIH Grant Title: Community Genetics and Ethics Projects
    
    
63. Haddow, Paula
    Foundation for Blood Research
    NIH Grant Title: Update and Dramatization of a Genetics Curriculum
    
    
64. Hadley, Don
    National Center for Human Genome Research and National Cancer Institute, NIH
    NIH Grant Title: Outcomes for Education and Counseling for HNPCC Testing
    
    
65. Hall, Mark A.
    Bowman Gray School of Medicine
    NIH Grant Title: Effects of Restricting Insurers' Use of Genetic Info
    
    
66. Hammond, Keith B.
    University of Colorado
    NIH Grant Title: National Institute of Diabetes and Digestive and Kidney Diseases 4th International Conference on Newborn Screening for C.F.
    
    
67. Heath, Deborah A.
    Lewis and Clark College
    NIH Grant Title: Mapping Genetic Knowledge: An Anthropological Study
    
    
68. Hilgartner, Stephen
    Columbia University
    NIH Grant Title: Agenda-Setting in the Human Genome Initiative
    NIH Grant Title: Organizing the HGI: Social Impact and Technology Design
    
    
69. Hoffmann, Lance
    George Washington University
    Washington, DC
    NIH Grant Title: 2nd Annual Conference on Computers, Freedom, and Privacy
    
    
70. Holmes, Helen B.
    Ferre Institute, Inc.
    NIH Grant Title: Impact of the HGI on Society: A Women's Studies Approach
    
    
71. Holtzman, Neil A.
    Department of Pediatrics, John Hopkins School of Medicine
    NIH Grant Title: Ethical and Legal Issues in the Diffusion of Genetic Tests
    NIH Grant Title: Ethical and Policy Issues in Cystic Fibrosis Screening
    
    
72. Honda, Sandra
    Baylor College of Medicine
    NIH Grant Title: The ELSI Electronic Case Book Project
    
    
73. Hood, Leroy Department of Immunology, University of Washington
    NIH Grant Title: Seminar on Ethical and Policy Issues Arising from the Project to Map and Sequence the Human Genome
    
    
74. Jonsen, Albert
    University of Washington School of Medicine
    NIH Grant Title: A Paradigm Approach to Ethical Problems in Genetics
    NIH Grant Title: Short Course in Ethics and Genomic Analysis
    
    
75. Juengst, Eric T.
    Center for Biomedical Ethics, Case Western Reserve University
    NIH Grant Title: Anticipating Enhancement: Ethical, Legal and Social Issues
    
    
76. Karajala, Dennis
    Arizona State University
    NIH Grant Title: A Legal Research Agenda for the Human Genome Initiative
    
    
77. Kay, Lily
    Massachusetts Institute of Technology
    NIH Grant Title: Information and the Transformation of Molecular Biology
    
    
78. Keleher, Cynthia
    Stanford University
    NIH Grant Title: Human Genome Project Education and Outreach
    NIH Grant Title: Human Genome Education Program
    
    
79. Kevles,Daniel J.
    Division of the Humanities and Social Sciences, CalTech
    NIH Grant Title: Seminar on Ethical and Policy Issues Arising from the Project to Map and Sequence the Human Genome
    
    
80. King, Mary Claire
    University of California
    NIH Grant Title: Sequencing mtDNA for Human Identification
    
    
81. Knoppers, Bartha
    University of Montreal
    NIH Grant Title: The First International Conference on DNA Sampling & Human Genetic Research: Ethical, Legal and Policy Aspects
    
    
82. Kuppermann, Miriam
    University of California
    NIH Grant Title: Optimizing Prenatal Testing Decision-Making
    
    
83. Laden, Vicki A.
    Stanford University
    NIH Grant Title: Legal Issues in Genetic Discrimination
    
    
84. Lapham, E. Virginia
    Georgetown University
    NIH Grant Title: Human Genome Education Model Program
    
    
85. Lea, Dale
    Foundation for Blood Research
    NIH Grant Title: Practice-Based Genetics Curriculum for Nurse Educators
    
    
86. Lerman, Caryn
    Georgetown University
    NIH Grant Title: Comparing Models of Pre-Test Education for BRCA1 Testing
    NIH Grant Title: Comparing Models of Pre-Test Education for BRCA1 Testing
    NIH Grant Title: Decisions and Outcomes of BRCA1/2 Test for Breast Patients
    
    
87. Lester, Helen
    WNET Thirteen
    NIH Grant Title: Medicine at the Crossroads
    
    
88. Magyari, Trish
    MACRO International, Inc.
    NIH Grant Title: Cystic Fibrosis Carrier Screening Educational Materials
    
    
89. Mahowald, Mary
    University of Chicago
    NIH Grant Title: The Human Genome Project and Women
    
    
90. Maley, Julie
    University of Virginia
    NIH Grant Title: An Educational Ethics Casebook for Genetic Counseling
    
    
91. Markel, Howard
    Johns Hopkins University
    NIH Grant Title: The Stigma of Disease: Implications of Genetic Testing
    
    
92. Mehlman, Maxwell
    Case Western University
    NIH Grant Title: "Access to the Genome: Justice at the Frontier of Science
    
    
93. Meisler, Miriam
    University of Michigan
    NIH Grant Title: Genome Center Education Program
    
    
94. Merz, Jon F.
    University of Pennsylvania Center for Bioethics
    NIH Grant Title: Informed Consent to DNA Banking for Research
    
    
95. Micklos, David
    Cold Spring Harbor Laboratory
    NIH Grant Title: Digital Image Archive on the American Eugenics Movement
    
    
96. Miesfeldt, Susan
    University of Virginia Health Sciences Center
    NIH Grant Title: Attitudes About Hereditary Breast Cancer
    
    
97. Miller, Suzanne M.
    Fox Chase Cancer Center
    NIH Grant Title: Facilitating Well-Informed Decisions for BRCA Testing
    
    
98. Mountcastle-Shah, Elizabeth
    Johns Hopkins Univ School of Medicine
    NIH Grant Title: "Social and Policy Issues in Genetic Technology Transfer
    
    
99. Moseley, Ray
    University of Florida
    NIH Grant Title: Insurance Implications of a Complete Human Genome Map
    
    
100. Murray, Jeffrey C.
     Department of Pediatrics, University of Iowa College of Medicine
     NIH Grant Title: ELSI Core for the Cooperative Human Linkage Center (CHLC)
     
     
101. Murray, Thomas
     Center for Biomedical Ethics, Case Western Reserve University
     NIH Grant Title: The Human Genome Initiative and Access to Health Care
     
     
102. Myers, Richard
     Stanford University
     NIH Grant Title: Human Genome Education Program
     
     
103. Nelkin, Dorothy
     Department of Sociology, New York University
     NIH Grant Title: Human Heredity in American Popular Culture
     
     
104. Offit, Kenneth
     Memorial Sloan Kettering Cancer Center
     NIH Grant Title: Impact of Genetic Counseling and Testing for Breast Cancer
     
     
105. Page, David
     Whitehead Institute
     NIH Grant Title: Human Genome Project: Science, Law, and Social Change
     
     
106. Pagon, Roberta
     University of Washington
     NIH Grant Title: Genline: An Electronic Clinical Genetics Knowledge Base
     
     
107. Parens, Erik
     The Hastings Center
     NIH Grant Title: Prenatal Testing for Genetic Disability
     
     
108. Peters, Theodore
     Pacific Lutheran Theological Seminary
     NIH Grant Title: Theological Questions Raised by the Human Genome Initiative
     
     
109. Petersen, Gloria
     Johns Hopkins University
     NIH Grant Title: Gene Tests for Colon Cancer Risk: Psychosocial Studies
     
     
110. Petrie, Carol (Richard Rau and)
     National Institute of Justice
     NIH Grant Title: DNA Forensics Science: An Update-Supplement
     
     
111. Phillips, John
     Vanderbilt University
     NIH Grant Title: Cystic Fibrosis Screening: An Alternative Paradigm
     
     
112. Post, Stephen G.
     Case Western Reserve University
     NIH Grant Title: Ethics, Genetics and Alzheimer Disease
     
     
113. Press, Nancy A.
     Oregon Health Sciences University
     NIH Grant Title: Family Disclosure of Cancer Risk: An Ethnographic Study
     
     
114. Proctor, Robert
     Penn State University
     NIH Grant Title: Cancer and the Human Genome: Ethical Implications
     
     
115. Prows, Cynthia A.
     Children's Hospital Research Foundation
     NIH Grant Title: Summer Genetics Program for Nursing Faculty
     
     
116. Rau, Richard (and Carol Petrie)
     National Institute of Justice
     NIH Grant Title: DNA Forensics Science: An Update-Supplement
     
     
117. Robertson, John A.
     University of Texas
     NIH Grant Title: The Use of Genetic Information in Reproductive Decisions
     
     
118. Rothman, David J.
     Columbia University
     NIH Grant Title: The Genome Project and Technologies of Enhancement
     
     
119. Rothschild, Joan
     University of Massachusetts
     NIH Grant Title: Science, Technology and the Perfect Child: An Ethics and Values Critique
     
     
120. Rothstein, Mark
     University of Houston
     NIH Grant Title: Legal and Ethical Issues Raised by the Human Genome Project
     
     
121. Rowley, Peter
     University of Rochester
     NIH Grant Title: Testing and Counseling for Cystic Fibrosis Mutations
     
     
122. Samuels, Sheldon W.
     Workplace Health Fund
     NIH Grant Title: Labor Conference on the Workplace and the Human Genome
     
     
123. Sarkar, Sahotra
     Dibner Institute
     NIH Grant Title: Genetic Reductionism-Its Sources and Implications
     
     
124. Saxton, Marsha
     Project on Women and Disability
     NIH Grant Title: Seeking Common Ground: A Forum for People with Disabilities and Genetics Professionals
     
     
125. Scanlon, M. Colleen
     American Nurses Association
     NIH Grant Title: Managing Genetic Information: Policies for US Nurses
     
     
126. Schneider, William
     Indiana University
     NIH Grant Title: Research and Application of Genetics Blood Group: 1900-1950
     
     
127. Short, M. Priscilla
     American Medical Association
     NIH Grant Title: Small Grant Program for Conference Support
     
     
128. Siders, Jane Z.
     University of Southern Mississippi
     NIH Grant Title: Genetic Education for Southeastern States (GenESES)
     
     
129. Singer, Eleanor
     Columbia University
     NIH Grant Title: Technology and Social Change: The Impact of Genetic Forecasting on Attitudes and Values
     
     
130. Smith, David H.
     Indiana University
     NIH Grant Title: Ethical Guidance for Family Studies in Human Genetics
     
     
131. Smith, Edward J.
     Tuskegee University
     NIH Grant Title: Tuskegee Genome Conference
     
     
132. Sorenson, James R.
     Department of Health Behavior and Health Education, School of Public Health, UNC Chapel Hill
     NIH Grant Title: An Evaluation of Testing and Counseling for CF Carriers
     NIH Grant Title: Hemophilia 'A' Carrier Testing-Acceptance and Reactions
     NIH Grant Title: An Experimental Study to Improve Risk/Benefit Appraisal
     
     
133. Sorkin, Donna
     Self Help for Hard of Hearing People
     NIH Grant Title: Consumer Conference on Genetics and Hearing Loss Research
     
     
134. Taylor, Kathryn
     Princes Margaret Hospital
     NIH Grant Title: International ELSI Cancer Research Workshop
     NIH Grant Title: Practice Guidelines - Cancer Risk Information Providers
     NIH Grant Title: Cancer Risk Information Providers (CRIP): Phase III
     
     
135. Teich, Albert
     American Association for the Advancement of Science
     NIH Grant Title: Ethical and Legal Implications of Genetic Testing
     
     
136. Texter, Cardie
     Massachusetts Corporation for Educational Telecommunications (MCET)
     NIH Grant Title: The Human Genome Project: Human and Scientific Dimensions
     
     
137. Trottier, Ralph
     Morehouse School of Medicine
     NIH Grant Title: Impact of HGP Derived Technology on Genetic Testing, Screening and Counseling: Cultural, Ethical, and Legal Issues
     
     
138. Wachbroit, Robert
     University of Maryland
     NIH Grant Title: Reassessing Health, Normality, and Confidentiality
     
     
139. Walters, LeRoy
     Department of Philosophy, Georgetown University
     NIH Grant Title: National Information Resource on Ethics and Human Genetics
     NIH Grant Title: National Information Resource on Ethics and Human Genetics
     
     
140. Wasserman, David T.
     University of Maryland
     NIH Grant Title: Genetic Factors in Crime-Findings,Uses Implications
     NIH Grant Title: The Impact of DNA Typing on Criminal Investigations
     
     
141. Weir, Robert
     Department of Pediatrics, University of Iowa College of Medicine
     NIH Grant Title: ELSI Core for the Cooperative Human Linkage Center (CHLC)
     
     
142. Wertz, Dorothy
     Division of Social Science Ethics and Law, Eunice Kennedy Shriver Center
     NIH Grant Title: Ethics and Genetics: A Survey of Approaches in the US and Canada
     NIH Grant Title: Geneticists Approach Ethics: An International Survey
     
     
143. Wilker, Daniel
     University of Wisconsin
     NIH Grant Title: Human Genome Research in an Interdependent World
     
     
144. Wilkinson, Susann
     Georgetown University
     NIH Grant Title: Biotechnology and the Diagnosis of Genetic Disease
     
     
145. Zaborsky, Oskar R.
     National Research Council
     NIH Grant Title: An Evaluation of the Application of DNA Technology in Forensic Science
     
     
146. Zallen, Doris
     Virginia Polytechnic Institute
     NIH Grant Title: The Human Genome Project: A Choices and Challenges Forum
     
     
147. Zilinskas, Raymond A.
     University of Maryland
     NIH Grant Title: The Human Genome Project: Reaching the Minority Communities of Maryland