When HIPAA does not hurt.

By Sophia Siedlberg

14 December 2008

What happens when an "ethicist" talks of "waiting to fly" on people she does not like "as a cat" and frequently expresses the desire to commit murder in an article announcing a new book she is writing with the help of a private detective?

I am assuming that the book or rather "murder mystery" that Alice Dreger is about to publish will involve digging up some very juicy "facts" about a lot of the people she does not like. I am sure "Harry the private detective seeking hard to find people and information about them" will be really doing his best for the epic hatchet job Alice Dreger is planning.

Is that what we are seeing?

Well, it does make me wonder when she has often expressed her great frustration at the Health Insurance Portability Accountability Act. In the US this is what generally comes into play when protecting patient confidentiality. Now look at what Alice Says about this act: 

"I sometimes try to help people recover their medical histories. Some I help were told out and out lies about what happened to them. Their medical caregivers were too ashamed or too paternalistic to tell them the truth. Some were too overwhelmed at the time of a medical crisis to make total sense then of what happened. If I can help people get copies of their old medical records, I can often help them understand (and heal from) what happened to them. But it is getting harder and harder to get those medical records as hospitals and clinics throw them out by the dumpster-full. One reason for the purge is cost, another space. But when I press keepers of medical records, they also tell me that HIPAA has accelerated the destruction. If you don't keep the records, they say, someone can't accidentally break the law by giving records to the wrong person."

I have no doubt "Harry" can be found sifting through the dumpsters looking for medical records. The way I see it is when Alice Dreger resorts to private detectives while furtively typing her next "study" of squealing lab rats, then that simply proves Alice would really like to use her academic privileges to access sensitive information about people she does not like.

This is the problem I have had all along with Alice Dreger. Whatever her ethics actually are, she seems to totally disregard those she does not like. This is exactly what patient confidentiality is all about, and why in the US there are things like HIPAA. She will probably make her on the fly diagnoses of people she has never met or bothered to speak to. I believe this is not medically ethical and I that there are safeguards against it.

But when it comes to patient confidentiality, I would like to remind Dr Dreger that if "Harry" has been getting patient identifiable medical information and publishes it to silence those she does not agree with, then she could be in violation of the law, and how will that look? If she sees herself as a cat stalking its prey while talking about wanting to murder people, and then goes and breaks the law, it will not look all that good, will it? You see there are some of us who have been so profoundly excluded by society, that whatever she writes we have nothing to lose. We don't have a reputation like she does. And if she is actually hinting about killing people, then perhaps she needs to reconsider that she is not in a position to do that. Where is the motive? People she clearly has power over, who she does not allow to state their case will make her look like a psychopathic bully if she kills them.

Hopefully Alice has not lost the plot to that extent. Let’s have a look at what she is unhappy about:

• Conspiracies and her being implicated in them.
  

• People attacking her because she defended Professor J Michael Bailey.
  

• Her belief that her brand of activism is the correct one and others call her an "interloper".
  

Let's begin with the conspiracies, shall we? How does it look when an ethicist talks of a patient group as if they are a "cosmic joke" and "untidy". When at the same time she advocates "parental choice" which is back door eugenics in the eyes of those she seems to want to eliminate? How does it look when all she seems to have done since people called her out over the policies of ISNA, etc. is to write non stop about the "squeals of lab rats". Let's be truthful here. A lot of people J Michael Bailey was mocking in his book The Man who would be Queen are not happy about it. Were they just supposed to sit there and say nothing?

Is this next book going to be her describing how outrageous the anger towards Bailey was? Or the anger towards her when she decided to control intersex medical discourse? Anyone who resorts to private detectives and talks of stalking people "like a cat" wishing she could "kill them" (presumably after playing with her prey as cats do) makes me wonder.

Why did people attack her over the "Bailey Brouhaha"? Well, she seemed to have decided to keep the controversy going after it had started to settle down. I have read the paper she has written on this to date and the content of Andrea James' website (her loudest critic) and her behavior seems consistent with someone who feels she needs to control the discussion. And she is up against people who feel a much more valid need to control their lives. On the one hand she writes "A Blog in fear" and then the next talks in exactly the manner she condemns in that blog.

The charge of interloper is perhaps the one I consider most important. Some middle class white academic housewife living in Michigan USA telling me how I should exist, and how people with my condition (5 alpha) should be treated, strikes me as interfering. She has often called herself an "intersex activist" and then complained when some intersex activists question her. She gets angry about the rejection of her as a Woman from Michigan? I think if we take a look at her particular demographic and how that group has interacted with intersex people, "interloper" would appear polite quite frankly.

I think Alice Dreger needs to understand that she is at a crossroads right now. She may attack prominent members of a number of "identity groups". However, she will never be able to silence those communities. As she takes out one set of people, others will take their place. That is what happens when a small group of privileged individuals attack grass roots communities.  Before she publishes, she needs to sit back for a moment and think. There are those who have repeatedly invited her to talk to them and she has replied with indifference or insult. If she attacks those people, she is attacking her own credibility.  Not only that, she may talk like she is a cat stalking its prey, but what is stalking her? I have said it before and I will say it again. She may provoke something that could be very detrimental to her. I am hoping for her sake that what she is now writing is objective. (There are hints it may be in the bitter commentary she has written about what she is doing).

That is all some of us are actually asking. Be objective; be honest and above all stay legal. If she does that, then she may gain some respect and reclaim some of her damaged reputation. If not then she could well be writing her own academic death warrant.

So what is at the core of the dispute?

The real issue is that of being told by people you have never met, in ivory towers, telling you than your very existence is a "disorder". Alice Dreger is entitled to her opinions, as is J Michael Bailey. I am one of the few critics of both who have said that free speech is important. I would never seek to get Bailey's book banned (it would be counterproductive anyway) but I should have the right to level my criticism as well. And yes, when I have felt I am being dismissed out of hand, I have resorted to more drastic measures to get my point across. (The caricatures and satirical articles).

Why should I just sit back and take being told that as a "DSD" I am "disordered" and then be told that because I have 5 alpha, I am supposed to be the sex opposite to the one I am? That is quite a personal and intrusive thing to say to anyone. People have accused Alice Dreger of advocating eugenics. Well, she was the one who came out in support of Bailey over the issue of "parental choice" for those being discussed (targeted) by such proposed policies, that is eugenics. But when she published the DSD handbook and guidelines, it was clear that the underlying discussion was about social cleansing. Okay, some may say it is not quite like that, but clinical gentrification is social cleansing, whatever euphemisms you use.

Many of us simply want to be left alone. If that is seen as "identity politics", then fine. See it that way, but on a personal level (this was the reason for the sometimes personal satire). It is simply a case of being told by someone in authority you have no right to exist. My deciding not to give the medical profession the satisfaction of having their initial handiwork recognized as valid, by rejecting what they did to me is my own choice and should be respected.

Why is this a problem? Why does Alice Dreger think she has the right to control my body? It is a simple question and one that lies at the core of the argument I have with her. I reached the stage many years ago where I said I will not be told what to do and how to live, especially by someone who has everything I would have wanted in life. Yes, that is resentment, and I consider that to be a legitimate feeling. When society is running round screaming, "Rut rabbit, rut rabbit, rut, rut, rut!" with all these sexologist making proclamations about me, a patient with 5 alpha, I will answer them back with equal measure.

It this society insists on surgically raping countless intersex children every year and then handing them over to the sadistic mind games of sexologists when they object to it, (this was John Money's mistake remember) then yes, people will defend themselves. Again, if only Alice Dreger took the time to hear those she "does not like", she would find where the problem actually lies, and how the system she has (by choice) come to represent has caused people to live with the physical and mental scars of social "norms" and medical malpractice.

I know that deep down she does think she is doing something positive and does agree with the core of what we are saying. What she does not understand is the pain many of us have had to endure. If she somehow manages to get sneaky and find out about some of us via "Harry" and our less than legally pulled medical records, she will see what some of us have suffered. If in the process she mocks us (again) and tried to use the information to undermine us, then she will be proving herself to be as she has often been portrayed.

If she takes the time to see what we are actually saying, then fine. Perhaps there is still room for discussion. That is her choice and the one she will be making when she hands her manuscript over for publication.

For a list of articles by Sophia Siedlberg: Click here