Expertise
  • Ethical, legal and social issues in genetic testing
  • The collection, storage and use of human tissues for genetic research
  • Informed consent

Psychosocial assessment of genetic technology; presymptomatic testing for genetic disorders.

Degrees
MA, Johns Hopkins University, Psychology, 1982
BA, Brown University, Psychology, 1977
PhD, Johns Hopkins University, Psychology and Public Health
Keywords
health and medicine medical genetics psychiatry molecular genetics
Honors

Who's Who Behind the Scenes, Indianapolis Business Journal, 2003

Outstanding Female Faculty, IUPUI, 2002

Award for Outstanding Contributions to Women and Work, Indiana Chapter AFL-CIO, 2001

Esquire Magazine Register, Science and Technology, Esquire Magazine, 1987

Graduate Student Research Grant, Maryland Psychological Association, 1983

NIMH Predoctoral Fellowship, The Johns Hopkins University, 1980-1983

Elected Member of Sigma Xi, Sorority, 1977

NSF Undergraduate Research Participation Grant, NSF, 1976

Associations
1990 - 1993 ~ Huntington Disease Society of America, Family Services Committee
1991 - 1993 ~ Board of Trustees - Huntington's Disease Society of America
1991 - present ~Ethics Committee - Consortium of the Genetics of Alcoholism
1991 - present - World Federation of Neurology
1991 - present - World Federation of Neurology Predictive Testing Committee
1992 - Advisory Committee, Project on the Ethical and Legal Implications of Genetic Testing, American Association for the Advancement of Science
1992 - present, Poynter Center for the Study of Ethics and American Institutions
1993 - present - Huntington Study Group
1994 - present - Association for Practical and Professional Ethics
1995 - 1998, Committee on Ethics in Research, IUPUI
1995 - 1998, Committee on Ethics in Research, IUPUI
1995 - 1998 - National Study Group ELSI-funded project Ethics, Genetics, and Alzheimer Disease, Stephen G. Post, P.I. Case Western Reserve University
1996 - present ~ Advisory Board - U.S. Huntington Disease Genetic Testing Group
1997 - 1998, Office for Women, IUPUI
1997 - Encyclopedia of Biotechnology: Ethical, Legal and Policy Issues Informed Consent to Genetic Testing and Screening
1998 - 2001, IUPUI Office for Women
1998 - 2002, IUPUI Committee on Ethics in Research
1999 - DOE ELSI Visions Workshop, Washington, D.C.
1999 ~ Ethics Oversight Committee, Huntington Study Group, Ira Shoulson, P.I., University of Rochester
1999 - present ELSI funded project offering APOE-4 testing for individuals at risk for Alzheimer Disease, Robert Green, M.D. - P.I., Boston University School of Medicine
2000 - present, Huntington Disease Society of America
2000 - present, Indiana State Advisory Board on Genetics Services
2000 ~ Selection Committee, Huntington Disease Society of America, Centers of Excellence Program
2001 - present ~ Steering Committee for Prospective Huntington At Risk Observational Trial- PHAROS, Ira Shoulson, P.I., University of Rochester
2002 - present ~ Recruitment Committee Neurobiological Predictors of Huntington Disease - PREDICT-HD Jane Paulsen, P.I, University of Iowa
2003 - 2007, Study Section, Ethical, Legal and Social Implications Program of the National Human Genome Research Institute
2003 - present, Bioethics Advisory Committee, Huntington Study Group
2004 - present - Huntington Study Group
2006 - 2007 - NIH Study Section, Ethical, Legal and Social Implications Program of the National Human Genome Research Institute
2007 - present - Indiana Genetics Advisory Committee