Our second speaker is Ms. Janice Becker, who has also shared with us a document that I think has been put in everybody's place book.

Thank you for joining us, Ms. Becker.

MS. BECKER: I want to make it clear that no organization represents me and no one has told me what to say. I have expounded on my experiences in my written testimony which I have submitted to the commission.

My daughter, Laura, was hospitalized at age 18 with schizophrenia. Antipsychotic medicines failed to alleviate her symptoms. Eight years later she was, indeed, institutionalized.

The Maryland Psychiatric Research Center seemed a chance to alter the dismal course of her life. In our interviews with the department director and social worker they emphasized the quality of patient care at MPRC.

A few months after her admission drug washouts were done and it was heartbreaking to watch Laura's condition deteriorate. She became very psychotic and exhibited severe involuntary muscle movement. We had not expected that she would be required to endure such painful symptoms without medication for years. Nor had we expected that she would be given drugs that would make her psychotic symptoms worse. It was a terrible time.

In fact, during Laura's entire stay at MPRC I know of no medications given to her that were aimed at alleviating her pain and symptoms until she was to be released.

We repeatedly asked for research protocols but were given evasive answers. Finally we received them and found she was already in a study and likely without informed consent. We found that most of the studies were protocols for haldol. We found that her allergy to haldol eliminated her as a candidate.

Our condition for Laura's admission was that she not be given haldol because of a severe dystonic reaction that she had previously suffered. In fact, she was used in some of the haldol studies. There were at least three times she was put on haldol and how many others we do not know.

Twice I visited her and found she was tied to a chair. The pillow cases which tied her wrists and ankles and the sheet tying her waist were soaked in perspiration. The knots were so tight that it took the nurse and me twenty minutes to untie her. She had also been given wet sheet wraps and cold baths. These restraints were prohibited in state hospitals. Did this not apply to MPRC?

I witnessed six staff holding Laura down until she was quieted. In another such incident her face was cut requiring sutures.

The program director called requesting a meeting as soon as possible with her and the chief of the inpatient program. At this meeting my husband and I were confronted with the fact that our daughter was three months pregnant. We were horrified. For two years Laura had been in a locked research unit and in a severely psychotic state. This was a criminal offense. To my knowledge there was no investigation to determine whether she was raped by a staff person, a patient, how often or if it was continuing.

I felt pressured to make an immediate decision for an abortion. We were then told to pay for it. When I asked if other research subjects had become pregnant while they were there I was told only three times. Why did it take three months for them to discover her pregnancy? I wanted her out of there but I was afraid of what might happen to her. I felt trapped. Laura was off all of her medications. She was in the worse condition I had ever seen her in and at times she was even dangerous.

How could someone actively psychotic and disoriented leave? A state hospital would seem an obvious place for Laura but I was concerned their deteriorating conditions. Bringing her home in that condition was certainly not a solution.

Laura, so ill, so vulnerable to pressure, and lacking an insight could not be expected to make informed choices.

Other families whose loved ones suffered similar inhumane treatment talked to me about their experiences at MPRC. We shared many of the same concerns and frustrations. We also questioned the scientific justification of keeping a patient on a locked ward for nine years without medication. This and many things left us with a feeling of helplessness. None of us knew where to turn for help and I do not know where to turn for help now.

What did the Laura's suffering and the suffering of others accomplish? Did anyone ever consider what effect this would have on the quality of their life or is that no one's concern?

I want a full investigation of the past, present and future practices at MPRC. I want consequences for wrongful actions. The inpatients need an autonomous doctor to ensure that the mentally ill are not exploited for other people's purposes.

Why are research animals better protected legally than human research subjects?

It is my sincere hope that this commission will promote these changes. No one should have to endure physical abuse, humiliation, or pain in the name of research.

Thank you.

DR. CHILDRESS: Ms. Becker, thank you very much for sharing that with us.

MS. BECKER: You're welcome.

DR. CHILDRESS: And also for the extensive written testimony.

Are there questions for Ms. Becker?

Alex?

MR. CAPRON: Some of the things that you have documented here go back a decade. What has happened since then? You have obviously raised these complaints. Have you had any response?

MS. BECKER: Raised them to who?

MR. CAPRON: Well, I cannot tell but I assume you have raised them to officials in Maryland to start off with.

MS. BECKER: Yes. I have raised some complaints. Well, actually I have given testimony at some other seminars and things trying to get the message out. I have not written my legislators, no, if that is what you meant.

MR. CAPRON: Or the attorney general?

MS. BECKER: No. You know, to tell you the truth the four-and-a-half years that my daughter went through has taken me much longer to get over because I feel guilty. I feel guilty because I was the one who wanted her in the program to break the hospitalization and maybe get her out in the community, and I have had some problems getting over that. And what documentation I had -- I do not have the protocols. I have written for them and -- I mean her medical records -- and they have not sent them.

But she is in the community and doing some better and she does consume a lot of my time and quite frankly I just wonder what good would it do as an individual. You know, I felt very much alone. I knew there were other families that went through it but it gets a little nerve wracking going over this and over this with different people when it is not effective.

So I had hoped, you know, that I had come to the right place finally.

MR. CAPRON: I do not think so. That is partly why I raised that.

MS. BECKER: Okay.

MR. CAPRON: I think this is a general issue for us. I think it is important that we hear these stories to have a sense of what is going on. But we are not an investigatory commission. We do not have the power to conduct investigations nor do we have -- particularly as to facilities which are not federal facilities any direct oversight at all. It would be a mistake if people came to us with the expectation that they had now put their case before a body which is in the position to do anything about it.

That is why I asked my question. It was not to be critical of you at all, ma'am. I can well understand the difficulties that you face and I applaud your willingness to come and share this story which is painful to tell with us.

But it is important that we have some understanding of what our role is and it is also important that you realize that we will not be in a position to subpoena those records, to hold an investigation, and to hold people accountable the way that maybe some state officials could do that. I do not know the situation there in Maryland but we are not in that position and it would be a shame if people coming before us today thought that was what was going to come out of this hearing.

DR. CHILDRESS: Thank you very much, Alex, for making that point.

At the end of your remarks when you were talking about things that you hoped from NBAC one was the line that Alex pursued and obviously we cannot do that. On the other hand you made some recommendations about autonomous doctors and that gets close to the kind of issue we can consider. What sorts of -- and that was raised also by Mr. Aller -- we can -- we are going to consider possible guidelines and how they might be used in research with decisionally impaired subjects. That really is our task.

Thank you very much for sharing your story.

We will have to move along steadily because we have four additional people who have indicated -- who have arrived today and indicated they would like to testify.