In my research I have sought to understand public attitudes and preferences regarding genetics research and genetic technology, using a complement of both qualitative and quantitative research. My current research focuses on patient attitudes regarding the use of blood samples for genetic research; attitudes towards recruitment approaches in family research; content analyses of consent forms for genetic research; attitudes about the privacy of genetic information and genetic testing; targeting of specific populations for genetic testing services; and decision-monitoring in adolescent research. Previously I have examined variability in IRB review of multicenter research; direct-to-consumer marketing and sales of genetic testing; and the role of the study coordinator in informed consent.

bioethics, research ethics, genetic research, qualitative research

1989-1993 Evelyn Fraites Scholarship for Liberal Arts

1989-1993 Justice Louis D. Brandeis Scholar’s Program, Brandeis University

1997-1998 Student Traineeship Grant for dissertation research, Cystic Fibrosis Foundation

1999-2003 National Institutes of Health Loan Repayment Program for General Research

Hull SC, Glanz K, Steffen A, Wilfond B (2004) “Recruitment Approaches for Family Studies: Attitudes of Index Patients and Their Relatives,” IRB: Ethics in Human Research, in press.

Hull SC, Gooding H, Klein AP, Warshauer-Baker E, Metosky S, Wilfond BS, “Genetic Research Involving Human Biological Materials: A Need to Tailor Consent Forms,” IRB: Ethics Human Research, in press

Hurst S, Hull SC, Duval G, Danis M, “How Physicians Face Ethical Difficulties: a Qualitative Analysis,” Journal of Medical Ethics, in press

Kass NK, Hull SC, Natowicz NR, Faden RR, Plantinga L, Gostin LO, Slutsman J (2003) “Medical Privacy and the Disclosure of Personal Medical Information: The Beliefs and Experiences of Those With Genetic and Other Clinical Conditions,” American Journal of Medical Genetics, in press

Kass NE, Natowicz MR, Hull SC, Faden RR, Plantinga L, Gostin LO, Slutsman J (2003) “The Use of Medical Records in Research: What Do Patients Want?” Journal of Law, Medicine & Ethics, 31:429-433

Gollust SE, Wilfond BS, Hull SC (2003) “Direct-to-Consumer Sales of Genetic Services on the Internet,” Genetics In Medicine, 5(4):332-337

Plantinga L, Natowicz NR, Kass NE, Hull SC, Gostin LO, and Faden RF (2003) "Disclosure, Confidentiality, and Families: Experiences and Attitudes of Those with Genetic Versus Non-Genetic Medical Conditions," American Journal of Medical Genetics, 119C:51-59

Gollust S, Hull SC, Wilfond B, (2002) “The Limitations of Direct-to-Consumer Advertising for Genetic Testing,” JAMA, 288(14): 1762-1766

Davis A, Hull SC, Grady C, Wilfond B, and Henderson G (2002) “The Invisible Hand in Clinical Research: The Study Coordinator’s Critical Role in Human Subjects Protection,” Journal of Law, Medicine, and Ethics, 30(3): 411-419

Hull SC, Taylor HA, and Kass NE (2001) “Qualitative Research,” in J. Sugarman and DP Sulmasy, eds. Methods in Medical Ethics, Washington, DC: Georgetown University Press, pp. 146-168

Hull SC and Prasad K (2001) “Reading Between the Lines: Direct-to-Consumer Advertising of Genetic Testing,” Hastings Center Report, 31(3): 33-35 [reprinted in Reproductive Health Matters 2001;9(18):44-48]

Silverman H, Hull SC, and Sugarman J (2001) “Variability Among Institutional Review Boards’ Decisions Within the Context of a Multi-Center Trial,” Critical Care Medicine, 29(2):235-241

Hull SC and Kass NE (2000) “Adults with Cystic Fibrosis and (In)fertility: How Has the Health Care System Responded?” Journal of Andrology, 21(6): 809-813