University of Michigan Disorders of Sex Development (DSD) Research and Quality Improvement Symposium

  • David E. SandbergEmail author
  • Anthony J. Asciutto
  • Emily Haddad
Conference paper
Part of the Advances in Experimental Medicine and Biology book series (AEMB, volume 707)


Disorders of sex development (DSD) are “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical” [1]. For families, the birth of a child with a DSD, and the attendant uncertainty about the child’s gender and future psychological and sexual development, is believed to be extraordinarily stressful. For health-care professionals, genital ambiguity and discordance among genotype, gonads, and anatomy can be the most challenging aspects of an already complex medical condition for which long-standing controversy over the most appropriate model of care exists [2].


Gender Identity Collaborative Learning Turner Syndrome Affected Person Complete Androgen Insensitivity Syndrome 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



The authors gratefully acknowledge Sharon Benjamin, PhD, Principal, Alchemy; Susan Salem-Schatz, ScD, Principal, HealthCare Quality Initiatives; and Ilene Rosin, MPH, President, Ilene Rosin, Inc. for their roles in conference design and facilitation. We also thank the following content experts who delivered the Conversation Café talks: Tom Mazur, PsyD, University at Buffalo and Women and Children’s Hospital of Buffalo; Anne Tamar-Mattis, JD, Executive Director, Advocates for Informed Choice (AIC); Helen Sharp, PhD CCC-SLP, Department of Speech Pathology & Audiology, Western Michigan University; and Laura A. Siminoff, PhD, Professor and Chair, Department of Social and Behavioral Health, School of Medicine, Virginia Commonwealth University. We also thank Carol Andreae-Nickles, Events & Public Relations Coordinator, Department of Pediatrics & Communicable Diseases, and Accord Alliance for providing conference logistics support. The DSD Research and Quality Improvement Symposium was supported by a symposium grant from the University of Michigan Office of the Vice President for Research, Initiative on Rare Disease, grants from the University of Michigan Departments of Pediatrics & Communicable Diseases, Surgery and Urology, and the Michigan Department of Community Health.


  1. 1.
    Lee PA, Houk, Christopher P., Ahmed, S. Faisal, Hughes, Ieuan A., in collaboration with the participants in the international consensus conference on intersex. Consensus statement on management of intersex disorders. Pediatrics. 2006;118(2):e488–e500.PubMedCrossRefGoogle Scholar
  2. 2.
    Stein MT, Sandberg DE, Mazur T, Eugster E, Daaboul J. A newborn infant with a disorder of sexual differentiation. Journal of Developmental & Behavioral Pediatrics. 2003;24:115–119.CrossRefGoogle Scholar
  3. 3.
    T’Sjoen G, De Cuypere G, Monstrey S, et al. Male gender identity in complete androgen insensitivity syndrome. Archives of Sexual Behavior 2010: Advance online publication. Retrieved from
  4. 4.
    Mazur T. Gender dysphoria and gender change in androgen insensitivity or micropenis. Archives of Sexual Behavior. 2005;34(4):411–421.PubMedCrossRefGoogle Scholar
  5. 5.
    Diamond M. Clinical implications of the organizational and activational effects of hormones. Hormones and Behavior. 2009;55(5):621–632.PubMedCrossRefGoogle Scholar
  6. 6.
    Kessler SJ. Lessons from the Intersexed. Piscataway, NJ: Rutgers University Press; 1998.Google Scholar
  7. 7.
    Chase C. Re: Measurement of pudendal evoked potentials during feminizing genitoplasty: technique and applications [Letter to the Editor]. The Journal of Urology. 1996;156(3):1139–1140.PubMedCrossRefGoogle Scholar
  8. 8.
    Minto CL, Liao LM, Woodhouse CR, Ransley PG, Creighton SM. The effect of clitoral surgery on sexual outcome in individuals who have intersex conditions with ambiguous genitalia: a cross-sectional study. Lancet. 2003;361(9365):1252–1257.PubMedCrossRefGoogle Scholar
  9. 9.
    Minto CL, Liao KL-M, Conway GS, Creighton SM. Sexual function in women with complete androgen insensitivity syndrome. Fertility and Sterility. 2003;80(1):157–164.PubMedCrossRefGoogle Scholar
  10. 10.
    Fausto-Sterling A. Sexing the Body: Gender Politics and the Construction of Sexuality. New York: Basic Books; 2000.Google Scholar
  11. 11.
    Butler J. Bodies That Matter. New York: Routledge; 1994.Google Scholar
  12. 12.
    Nembhard IM. Learning and improving in quality improvement collaboratives: which collaborative features do participants value most? Health Services Research. 2009;44:359–378.PubMedCrossRefGoogle Scholar
  13. 13.
    Ayers LR, Beyea SC, Godfrey MM, Harper DC, Nelson EC, Batalden PB. Quality improvement learning collaboratives. Quality Management in Healthcare. 2005;14(4):234–247.Google Scholar
  14. 14.
    Curşeu PL, Schruijer S, Boroş S. The effects of groups’ variety and disparity on groups’ cognitive complexity. Group Dynamics: Theory, Research, and Practice. 2007;11(3):187–206.CrossRefGoogle Scholar
  15. 15.
    Zimmerman J, Dabelko HI. Collaborative models of patient care – new opportunities for hospital social workers. Social Work in Health Care. 2007;44(4):33–47.PubMedCrossRefGoogle Scholar
  16. 16.
    Conversation Café. Accessed June 2, 2010.
  17. 17.
    Herman M. Open Space World. Accessed June 2, 2010.
  18. 18.
    Gawande A. The Bell Curve: What happens when patients find out how good their doctors really are? December 6, 2004; Accessed September 6, 2010.
  19. 19.
    Steele JR, Wellemeyer AS, Hansen MJ, Reaman GH, Ross JA. Childhood cancer research network: a North American pediatric cancer registry. Cancer Epidemiology Biomarkers & Prevention. July 2006;15(7):1241–1242.CrossRefGoogle Scholar
  20. 20.
    Chase C. What is the agenda of the intersex patient advocacy movement? Endocrinologist. 2003;13(3):240–242.CrossRefGoogle Scholar
  21. 21.
    Frader J, Alderson P, Asch A, et al. Health care professionals and intersex conditions. Archives of Pediatrics & Adolescent Medicine. 2004;158(5):426–428.CrossRefGoogle Scholar
  22. 22.
    Kessler SJ. The medical construction of gender: case management of intersexed infants. Journal of Women in Culture and Society. 1990;16(11).Google Scholar
  23. 23.
    de María Arana M. A human rights investigation into the medical “normalization” of intersex people. April 28, 2005; Accessed September 6, 2010.
  24. 24.
    Mort EA. Clinical decision-making in the face of scientific uncertainty: hormone replacement therapy as an example. Journal of Family Practice. 1996;42(2):147–151.PubMedGoogle Scholar
  25. 25.
    Bondy CA, for The turner syndrome consensus study G. Care of girls and women with Turner Syndrome: A guideline of the Turner Syndrome Study Group. Journal of Clinical Endocrinology Metabolism. 2007;92(1):10–25.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2011

Authors and Affiliations

  • David E. Sandberg
    • 1
    Email author
  • Anthony J. Asciutto
    • 2
  • Emily Haddad
    • 1
  1. 1.Division of Child and Behavioral Health, Department of Pediatrics & Communicable DiseasesUniversity of MichiganAnn ArborUSA
  2. 2.Accord AllianceBostonUSA

Personalised recommendations