Alice Dreger: The unethical ethicist?

By Curtis E. Hinkle

© 2008

February 29, 2008

Alice Dreger, the DSD activist, who bills herself as a bioethicist has over the past few years become mired by one ethical scandal after another. Just to mention a few of her scandals, let me start with what will be one of the major setbacks in intersex history. It was Alice Dreger who was one of the prime movers of the shift from “intersex” to DSD, “disorders of sex development”. She did this by consulting with doctors and determining what worked for them and consulted the intersex community after the change had been made. Quite unethical for an ethicist because there is practically no support for this replacement of the term “intersex” with “disorders of sex development” and the ensuing Consensus Statement (1) which approved this change of terminology which elaborated a set of protocols that are a major setback for intersex people with surgery being recommended between two and six months of age. (2) This was a scandal of historical proportions.

After controlling intersex activism for over a decade and leaving it in shambles, she decided to move on to transgender activism. And already she is becoming the same divisive “activist” in the transgender movement that she was in the intersex movement. She has begun by taking sides with the gatekeepers of the trans movement, just as she placed herself with the gatekeepers of the intersex community and then left us with a more pathological terminology and set of protocols based on intersex being a genetic defect. (3)

As she started her trans activism, many of us in the intersex movement saw the same pattern slowly emerge that had been her hallmark within the intersex movement – siding with proponents of a highly problematic, pathological definition of transsexualism and attacking any opponents who resisted the academic and discursive control she was usurping over their own right to self definition and in determining their own sociopolitical agenda without having to contend with another interloper who had no experiential understanding of trans issues.

All of a sudden she picked a fight with Andrea James and tried to prevent Ms. James from being allowed to speak at the university where Alice Dreger works and alleged she was afraid of Andrea James. It was quite odd that the organization which invited Ms. James to speak at Northwestern University where Dreger works was evidently not frightened by Andrea James. Dreger decided to use the Bush foreign policy model of a pre-emptive strike against anyone who might possibly be viewed as a threat and published “The blog I write in fear” (4) in which she brought up an unfortunate event that had happened a few years ago between her colleague J Michael Bailey and Andrea James. She alleged she was frightened of Andrea and that she should not be allowed to speak at the University. This is the strawman that has been used for years now to silence any discussion of the unethical behavior that Bailey and Dreger have been involved in. Instead of dealing with the facts of their own behavior, anyone who dares discuss the facts is automatically smeared with ad hominem attacks linking them to the serious mistake that Andrea James made a few years ago. Dreger even did this to me when I openly questioned her DSD model as a replacement for intersex. (5) Instead of dealing with what she was doing, Dreger sent out an e-mail alleging that I had teamed up with Andrea James, someone I didn’t know at the time, and warned intersex people that if they were not vigilant, the intersex movement would be destroyed. Well, that was already a fait accompli and it was Dreger who was instrumental in its destruction. Many of us are trying to rebuild and move on.

We later found out why Dreger was alleging she was so afraid of Andrea James. She was working at the same University as J Michael Bailey and she was writing an article in defense of his unethical behavior and she was going to include Andrea James in that article. It certainly would be good fodder for the article if she could have provoked Andrea to get more dirt on her to include in her upcoming “exposé” of the “facts” to suit her employer, Northwestern University.

Dreger then published a 60-page tome in defense of her colleague, J Michael Bailey and in that article she once again threw ethics out the window and simply gives Bailey another platform to justify having sex with research subjects: “there is nothing intrinsically wrong or forbidden about having sex with a research subject[….] Some of my colleagues have had sex with their research subjects, because it is not unusual to ask one’s romantic partner to be a subject” (Bailey, 2005).” Rather disturbing ethical standards that Dreger is disseminating in this tome in defense of her colleague. (6)

Finally, someone is challenging Dreger on her ethics and many of us in the intersex community feel it is high time. Robin Mathy has filed ethics complaints with the American Psychological Association against Dreger and Bailey. One of the allegations in the complaint centers on Dreger and Bailey having both expressed that having sex with a research subject is not inherently wrong. Robin Mathy has also filed a complaint with the Illinois Board of Examiners of Psychology against Bailey for allegedly misrepresenting himself as a psychologist. (7)

It does appear that Robin Mathy has a lot of facts to substantiate these allegations along with many others. Ethics? Alice Dreger’s ethics seem to be focused on what is best for her career and gaining access to more power, not helping the powerless which she now has a history of dismissing, silencing and abusing.

Notes:

(1) Consensus Statement on Management of Intersex Disorders

http://www.pediatrics.org/cgi/content/full/118/2/e488

(2) This is a quote from the Same group that gave us the Consensus Statement on DSD's.

Consensus Statement on 21-Hydroxylase Deficiency from The Lawson Wilkins Pediatric Endocrine Society and The European Society for Paediatric Endocrinology Joint LWPES/ESPE CAH Working Group

Surgery is recommended at age 2-6 months:

----------------------------------------------------------------------

"Once a decision has been made to raise a newborn as female, surgery for those with virilized genitalia caused by CAH is recommended when the patient has a high proximal junction between the vagina and urethra (12, 13). Surgery on infants with ambiguous genitalia requires a high degree of expertise and should only be performed in centers with significant experience. Based on recent clinical experience, the recommended time for surgery is at age 2–6 months; although, at present, this is not universal practice. It is important to note that surgery at this stage is technically easier than at later stages."

You can download the complete Consensus Statement on CAH at:

http://jcem.endojournals.org/cgi/reprint/87/9/4048

(3) Alice Dreger: Disorders of Sex Development

http://www.intersexualite.org/AliceDreger.html

(4) “The Blog I Write in Fear”. May 13, 2006.

http://www.alicedreger.com/in_fear.html

(5) Email from Alice Dreger to some intersex activists

http://www.intersexualite.org/AliceDreger.html#anchor_26

(6) “In his online self-defense piece, “Academic McCarthyism,” published in October 2005, Bailey countered with this: “her ‘complaint’ is not true. The alleged event never happened. If I ever needed to do so, I could prove this, but there is no reason why I should” (Bailey, 2005). Bailey’s reasoning for why he should not have to prove he didn’t have sex with Juanita was twofold: first, he “insist[ed] that Juanita was not a research subject” when she claimed they had sex; second, “there is nothing intrinsically wrong or forbidden about having sex with a research subject[….] Some of my colleagues have had sex with their research subjects, because it is not unusual to ask one’s romantic partner to be a subject” (Bailey, 2005).”

Dreger, Alice. 2007. The Controversy Surrounding The Man Who Would Be Queen: A

Case History of the Politics of Science, Identity, and Sex in the Internet Age. p. 43

(7) Debate resumes on methods of psych professor's research by Michael Gsovski

Issue date: 2/27/08

http://www.dailynorthwestern.com/home/index.cfm?event=displayArticle&ustory_id=c6222fa5-96dd-47ee-b912-c58a9874fbdf

DSD: North American Medical fascism and manufacturing consent

By Curtis E. Hinkle

Founder, Organisation Intersex International

One of the most important questions to ask concerning the controversy surrounding the term “DSD”, Disorders of sex development, as a replacement for intersex is a simple one. Why do we need to have a name at all? Why do we need to have a diagnosis at all? Other important questions include who is naming us and for what reasons? Does this have anything to do with us at all? Should it even concern us?

In the last several years, many people who are not intersexed have been working to come up with a new term to replace the term “intersex”? It is interesting that we in OII have found almost no intersex people that were actively involved in this search for a new term. We have found almost no intersex people who had previously been writing articles and scientific justifications for replacing the term intersex with the term “Disorders of Sex Development”. We therefore conclude that the search for a new term was something of intense importance to people who are not intersexed but of little or no importance to intersexed people themselves. The only exception that I can document is Cheryl Chase, the one intersexed person who co-authored the following article with Alice Dreger and Dreger’s husband, Dr. Aron Sousa.

“Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale”, Alice Dreger et al, Journal of Pediatric Endocrinology & Metabolism, 18. (729-733 (2005).

http://www.medhelp.org/ais/PDFs/Dreger-Nomenclature-2005.pdf

In this article, the authors propose replacing the term hermaphrodite and the 5-sex system which divides humans into females, males, true hermaphrodite, male pseudohermaphrodite and female pseudohermaphrodite with the term “disorders of sex differentiation” (later changed to disorders of sex development) because this would work better in a medical context. What is so problematic about this article which was seminal in the shift from intersex to DSD is that there is no challenge to the assumption that intersex variations need to have a medically accurate name at all. The whole article is based on the assumption that sex variations are indeed pathological and require treatment. However, the article gives no proof at all for such an assumption and that is the serious contradiction in the arguments put forward in the article. Any serious medical conditions that a person who is not standard male or female has are exactly the same medical conditions that standard males and females have. The more important question would have been to focus on medical conditions that actually do affect people who are intersex and explain how these might require slightly different medical treatments than in a person who is not intersexed. However, this article assumes that one’s sex variation is the disease to be treated and never challenges that assumption and it concludes by suggesting that one approach would be to use etiology-based diagnoses. (1)

For years both Dreger and Chase stressed that intersex was not a pathological condition but a biological variation. “Intersex is a socially constructed category that reflects real biological variation.” (2) If this is so, it is also obvious that the shape and size of one’s nose is also a biological variation just as the size and shape of one’s clitoris. If a person wishes to change the size and shape of one’s nose, that is available to them and there are surgeons who will do these operations for them. There is no group I am aware of that is coming up with an umbrella term to include all nose variations in the population which would make all these variations a medical pathology and which could justify changing the shape of noses without the consent of the person with the nose. Parents can still have cosmetic surgery on a child’s nose if they feel it will prevent their child from functioning well in society. There could be an argument made that nose shape and size could be more stigmatizing than the size of one’s clitoris or penis because we usually present ourselves in public with our noses exposed.

Despite the good intentions that are expressed in this article, the medical emergency that intersex supposedly represents is what is the focus for justifying the change of the terminology. In this article, the emergency now is coming up with a medical diagnosis which will classify all variations of sex development so that people with this “medical emergency” can get better treatment. But shouldn’t the more basic question be to ask why this is being treated at all? That is not the case.

Dreger’s article promotes the use of the old-time medical phrase “disorders of sexual differentiation" (later changed to “development”) – using the straw man of “hermaphroditism” as if it were the word being replaced (instead of intersex being the word they wanted to replace):

In conclusion, we suggest the language of ‘hermaphroditism’ and ‘pseudohermaphroditism’ be abandoned. One possible alternative . . . is to use instead . . . the umbrella term “disorders of sexual differentiation”. Such an approach would have the salutary effects of improving patient and physician understanding and reducing the biases that are inherent in the use of the current language of ‘hermaphroditism’. – Dreger et al.

That old medical terminology had been adopted in 2003 in the mission statement of "The Network on Psychosexual Differentiation" and the John Hopkins. It was that NICHD group of researchers, funded by NIH, who are behind the Northwestern/Penn State DSD Consortium that had hired Dreger:

http://nichdnet.psych.psu.edu/

http://nichdnet.psych.psu.edu/aims.html

It would appear that the John Hopkins Medical University (responsible for all the traumatizing experiments on intersex children by Dr. John Money and the theories he developed which continue to justify irreversible sex assignment surgeries) has a vested interest in protecting itself from the possible litigation that could have been directed against them and it was the John Hopkins Medical University which started using the "disorder" terminology even before the NICHD. It is also interesting to note that the author and central figure in this shift in terminology, Alice Dreger, is the associate editor of one of the official publications of the Johns Hopkins University Press. (3)

There seems to be a conflict of interest on Dreger’s part. And if you read her articles closely this conflict of interest will become more and more evident. What appears at first to be a move towards depathologizing intersex starts being seen for what it really is – a way of pinning down intersex and ALL variations of sex differentiation as an illness.

In a recent lecture at the Kinsey Institute that Alice Dreger entitled: "No Matter How You Slice It? Parsing Intersex", Dreger stated:

“A couple of people at my Kinsey talk pressed me about the terminology and asked me to work more on trying to find a new, better term. What about, for example, "variations of sex development," as some have suggested? Honestly, I don't see that term flying in the medical system; I've asked about it, and it doesn't go anywhere. Part of the reasonable fear among medical professionals is over-de-pathologizing sex anomalies. . .” (4)

Sophie Siedlberg responded to Dreger's pathological defense: "Reasonable fear of de-pathologizing sex anomalies? Like what is that supposed to mean? That doctors are upset because some people object to terminology that in law allows the doctors to slice, dice and rotate children on a spit or something?" (5)

Is there a need for name for sex variations at all? Many people will not feel there is and feel comfortable with the terms male and female but to others the term intersex appears helpful and has been working well for many of us. It is to be noted that no one is imposing this term on anyone. It is not a legally imposed sex and intersex activists are not working to impose this term on people in a medical context either. Nothing could be further from the truth. People born with sex variations are free to consult doctors for problems which affect their health but does that give them the right to work to impose medically defined pathologies on all people who are born with sex variations who see their body as a natural variation, not a medical emergency? The fact is that there are almost no intersex people involved in doing this. It is people like Dreger who is not intersex and medical doctors and parents who are behind this and we should hold them accountable and ask them why they want to humiliate us and pathologize us.

Footnotes:

1. Page 733. “Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale”, Alice Dreger et al, Journal of Pediatric Endocrinology & Metabolism, 18. (729-733 (2005).

2. What is intersex? http://www.isna.org/faq/what_is_intersex

3. According to the official site for the journal Perspectives in Biology and Medicine, the Associate Editors are Alan N. Schechter and Alice D. Dreger.
http://www.press.jhu.edu/journals/perspectives_in_biology_and_medicine/editorial.html

(4) Dreger, Alice. Why “Disorders of Sex Development”? (On Language and Life)

http://www.alicedreger.com/dsd.html

(5) Siedlberg, Sophia. Treestumps and Broomsticks. http://www.intersexualite.org/Siedlberg.html#anchor_12

Elizabeth Reis defames and trivializes intersex people

I notice a critical flaw in Figure 4-A. The figure contradicts Dr. Dre’s (PhD) treatise entitled ‘Bitches ain’t shit’. In it is stated that “Bitches ain’t shit but hoes and tricks”. While you have correctly shown that ‘Bitches’ and ‘Shit’ are two discrete groups (i.e. that “Bitches ain’t shit”), you have incorrectly shown the class of “bitches” as existing partially outside of the groups “tricks” and “hoes”. The correct formulation of the theory would have “bitches” as the intersection of the two classes, with no section outlying. Keep in mind, bitches ain’t shit but hoes AND (not and/or) tricks.
http://www.complex.com/blogs/2007/09/10/droppin-science-on-gangsta-rap/
When I first read Elizabeth Reis' article justifying DSD as the best term for intersex, I immediately thought of this Venn diagram.

Below is the abstract of a recent article written by Elizabeth Reis, someone who is not intersex, who tries to justify the unjustifiable by thinking some clever little slight of hand will make all well with DSD terminology. No regard is given to intersex voices and our real dignity and right to speak for ourselves and to have an equal say in our lives and our own struggle for human rights. Most women don't like being called bitches and ho's and I don't appreciate this woman telling me that DSD is a good slur for me by pretending I can think it means divergence of sex development rather than disorder of sex development. DSD is DSD and Elizabeth Reis would do better to stop trivializing and pathologizing intersex people and our struggle for human rights and to start listening to us.

Divergence or disorder? the politics of naming intersex.
Author: Elizabeth Reis.
Source:Perspectives in Biology and Medicine 50.4 (Autumn 2007): p535(9). (3827 words) Reading Level (Lexile): 1580.
COPYRIGHT 2007 Johns Hopkins University Press

ABSTRACT The conditions once known under the umbrella terms intersex and hermaphroditism are now generally being called disorders of sex development in medical settings. The terms might seem synonymous, but in fact there are significant differences with controversial consequences. Hermaphroditism, an older term that can still be found in many medical writings, is vague, demeaning, and sensationalistic, conjuring mythic images of monsters and freaks. In the 1990s, activists advocated intersex to describe discordance between the multiple components of sex anatomy, but that word alienated many parents of affected children, as it suggests a self-conscious alternative gender identity and sexuality. Disorders of sex development also refers to intersex, but it deemphasizes the identity politics and sexual connotations associated with intersex, avoids the degradation associated with hermaphrodite, and instead highlights the underlying genetic or endocrine factors that cause prenatal sex development to take an unusual path. I argue that using disorder is problematic, because it implies medical conditions in need of repair, when some intersex anatomies, though atypical, do not necessarily need surgical or hormonal correction. I advocate a less pathologizing new term, divergence of sex development, that might reduce some of the conflict over nomenclature and satisfy intersex people, their parents, and their doctors.

1) Elizabeth Reis cites only 1 intersex person who is opposed to this stigmatizing terminology. Her article is based on doctors, specialists and other non-intersexed people and what THEY think is best for us.

2) Elizabeth Reis uses a lot of ideas from our own website but never mentions all the hundreds of people in OII and their opposition to this humiliating treatment and the exclusion of almost all intersex people in coming up with DSD terminology and the subsequent protocols based on this change of terminology.

I am left with the impression that Elizabeth Reis is nothing but another feminist, norm-born woman wanting to speak for the intersex community in order to try to justify the unjustifiable and further marginalize us because we don't fit her definition of what it means to be fully human capable of speaking for ourselves. We are not a divergence; we are not a disorder and she would feel just as offended if we wrote such offensive articles speaking on behalf of women and why they should be a called a DIVERGENCE FROM MALE but not a woman.

I am not convinced this woman has come very far in her feminist principles. I would suggest that she stop speaking for us and listen to us - not just one or two intersex people who agree with her. - Curtis E. Hinkle, founder of the Organisation Intersex International