UK Researchers: A knack for asking good questions

I’ve been updating my references database, and I continue to be impressed by the sophistication of the work coming from UK professionals on intersex issues. These articles are a great example.

• Alderson, J, A Madill, and A Balen. 2004. Fear of devaluation: Understanding the experience of women with androgen insensitivity syndrome. BJ Health Psychol 9 (1):81-100.

• Liao, Lih-Mei. 2003. Learning to assist women with atypical genitalia: journey through ignorance, taboo and dilemma. J Reprod Infant Psychol 21:229- 38.
  
• Boyle, Mary E., Susan Smith, and Lih-Mei Liao. 2005. Adult Genital Surgery for Intersex: A Solution to What Problem? Journal of Health Psychology 10 (4):573-584.

• Ogilvie, Cara Megan, Naomi S. Crouch, Gill Rumsby, Sarah M. Creighton, Lih-Mei Liao, and Gerard S. Conway. 2006. Congenital Adrenal Hyperplasia in Adults: A Review of Medical, Surgical and Psychological Issues. Clinical Endocrinology 64 (1):2-11.

• Conn, J, L Gillam, and GS Conway. 2005. Revealing the diagnosis of androgen insensitivity syndrome in adulthood. BMJ 331 (7517):628-30.

The Androgen Insensitivity Syndrome Support Group maintains an excellent web page detailing the various types of intersex research underway. Be sure to have a look at Differing Agendas?, their critique of the misguided focus of most of the research (“The main problem in AIS, as we see it, is a total lack of awareness by the medical profession of the problems involved in growing up with this condition.”)

I think that the misguided focus on gender (as opposed to stigma and trauma, which are the most salient issues for most patients and families) is what prevents researchers from asking more clinically relevant questions. What’s really disappointing is that so many physicians dismiss the work of the London group as irrelevant. Here are two glaring examples:

• Davis, Jeanie Lerche. 2003. “Clitoral Surgery Bad For Babies?”: http://www.webmd.com/content/article/63/72064 WebMD, April 11.

• Frimberger, Dominic, and John P. Gearhart. 2005. Ambiguous Genitalia and Intersex. Urologia Internationalis 75 (4):291-7.