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EDUCATION AND DEBATE: Jennifer Conn, Lynn Gillam, and Gerard S Conway Revealing the diagnosis of androgen insensitivity syndrome in adulthood BMJ 2005; 331: 628-630 [Full text]

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Life insurance report

Tom Sargent   (25 September 2005)

Is revealing the diagnosis of androgen insensitivity syndrome a dilemma for doctors only?

Lih-Mei Liao, Sarah Creighton   (27 September 2005)

Life insurance report 25 September 2005
Tom Sargent, Family Doctor Richmond Practice Bo'ness EH51 9EG Send response to journal: Re: Life insurance report	I write from general practice with no expertise in endocrinology. I see that the patient is going abroad and wonder if any travel insurance was sought. Such policies may query current illness and treatment. She has recently been bereaved. She may want to move to another part of this country or abroad. She may wish to buy a house. Many mortgages will request a life insurance policy to cover the payments and a family doctor may be asked to give medical details. At least the diagnosis and current treatment are usually required though many companies will now add a comment to say "tell us if the patient should not have certain information disclosed". If the policy goes through without problem so be it. If not the patient may well arrive unannounced in an ordinary 10 minute surgery slot somewhat aggrieved wishing to find out why. The report may have been completed by one of my partners and I may not know the patient. I doubt if I could deal with that well. The last paragraph in the case history section suggests I would not be alone. I appreciate that medical thinking has changed over the years but one of the reasons (other than moral) why I do not tell patients fibs is because I may not always remember exactly what I did say six months before. Competing interests: None declared
Is revealing the diagnosis of androgen insensitivity syndrome a dilemma for doctors only? 27 September 2005
Lih-Mei Liao, Consultant Clinical Psychologist University College London Hospitals, Sarah Creighton Send response to journal: Re: Is revealing the diagnosis of androgen insensitivity syndrome a dilemma for doctors only?	Sir, In their article, Conn and colleagues 1 highlighted the dilemmas that clinicians face in revealing the diagnosis of androgen insensitivity syndrome (AIS) to adults who have been cared for under the traditional clinical paradigm of non-disclosure. It is not clear from their article how far back the case history dates, but disclosure of AIS (and intersex in general) is not a new ethical problem. Ethical and psychological issues have been raised for many years by adults with AIS 2 3 and by clinicians and scholars concerned with intersex. If non-disclosure were justifiable on the basis of projected psychological impact, many medical diagnoses might be similarly withheld from patients. Conn et al alluded to the potential danger of self diagnosis by patients on the web. Indeed, personal and professional accounts 4 documenting individuals’ precarious fact finding missions proliferate in the literatures. Ethical debates had culminated in an entire issue of the Journal of Clinical Ethics being devoted to intersex in 1998. New formulations of care giving have been put forward, emphasising close collaboration between multi-disciplinary service providers and users. 5 Much less articulated are the new challenges that patients face under these new arrangements. Giving information to adults who have come from services that practised non-disclosure (UK and abroad) has been part of our work for some years. Upon learning about their diagnosis, a most common concern expressed by patients relates to future self disclosure about AIS in social contexts.6 Increasingly it is individuals with AIS rather than their doctors who are confronted with ‘ethical dilemmas’ about giving explanations (e.g. to sexual and marriage partners), and about the timing of information. Communicating to people about AIS may feel unsafe (e.g. “they would flip”), whilst withholding information may threaten personal integrity (e.g. “what kind of person does that make me?”) There has been little formal research on the reverberating impact of diagnostic information on patients and significant people in their lives. The disclosure story does not end with us telling our patients about AIS; the inevitability of this is generally taken for granted. Future work is needed to understand what happens afterwards and to conceptualise appropriate and effective strategies for professional and peer support. Lih-Mei Liao, Sarah Creighton References 1. Conn J, Gillam L, Conway GS. Revealing the diagnosis of androgen insensitivity syndrome in adulthood. BMJ 2005;331:628-30. 2. Anonymous. Once a dark secret. BMJ 1994;308:542. 3. Groveman S. The Hanukkah bush: ethical implications in the clinical management of intersex. J Clin Ethics 1998;9:356-9. 4. Alderson J, Madill A, Balen A. Fear of devaluation: understanding the experience of women with androgen insensitivity syndrome. BJ Health Psychol 2004;9:89-100. 5. Creighton SM, Minto CL. Managing intersex. BMJ 2001;323:1264-5. 6. Liao LM. Learning to assist women with atypical genitalia: journey through ignorance, taboo and dilemma. J Reprod Infant Psychol 2003;21:229- 38. Competing interests: None declared