by Elayne Clift
The National Institutes of Health (NIH), America’s premier institution for health research, is having its own pulse taken these days. Under pressure from the Congressional Caucus for Women’s Issues, women scientists and others, the complex of institutes is being scrutinized for its treatment of women as research subjects and researchers.
NIH, which supports most of the medical research done in the U.S., first said in 1986 that it would encourage greater inclusion of women in its studies, but it did not issue guidelines on its new policy until July, 1989. Those guidelines stated that while “most researchers adequately and appropriately consider gender representation in clinical research design. ..public concern requires that clinical studies include both genders in such a way that results are applicable to the general population.” One of the most publicized omissions of that policy was the now famous aspirin study financed by NIH which showed that an aspirin every other day could prevent some heart attacks. The study involved 22,071 subjects – all male physicians.
Largely because of pressure brought by the increasingly powerful Congressional Caucus for Women’s Issues, co-chaired by Representative Patricia Schroeder of Colorado and Olympia Snowe of Maine, an effort is now underway to focus attention on U.S. women’s health. For example, the federal government’s Office of Technology Assessment has begun to study the state of knowledge and research on menopause and hormone replacement therapy. The Women’s Health Equity Act, a set of 22 separate bills addressing research, services and prevention, has just been reintroduced in Congress. And last spring, the Government Accounting Office’s report on the lack of clinical trials that include women prompted formation of the Office for Women’s Health Research at NIH.
Headed by Dr. Ruth Eirschstein, acting Director of the National Institute of General Medical Sciences, the Office has several goals in addition to setting a research agenda on women’s health for the next decade.
“One goal is to make sure we put the appropriate monitoring system in place to be able to retrieve data and analyze it to see if there is appropriate inclusion of women in clinical studies,” Kirschstein said. “The second is to work with the Institute of Medicine on whether or not it is possible to design clinical studies so that women within childbearing age can participate in therapeutic trials. We know that the reasons for excluding them in the past have been good and valid – the concerns about drugs such as thalidomide causing teratogenesis. What we’re not sure of is whether or not this has been a convenient excuse or whether, with the new activities related to contraception and some of the lifestyles and choices of women in modern day America, it would be possible to design such studies. The third goal is to bring in the chairmen [sic] of what are called the institutional review boards of the various medical centers who have to review clinical research, and talk with them about why more questions are asked about including women in studies than there maybe with men, and whether we can develop a methodology to improve that.”
Kirschstein believes that her office has already had an impact. Notice has been given that women be included in clinical trials, she reminds us. Closer monitoring, she adds, will look at research grant proposals to see if women are included, and if not, to ask why the study should go forward. “If the justification is not sufficient, then those studies, regardless of how scientifically meritorious they are, will not be funded.”
Whether or not women are included in research studies is only one critical issue. The other question is: Are they included as researchers? According to Dr. Margaret Jensvold, a psychiatrist who has filed suit against the National Institute of Mental Health (NIMH), the answer is a resounding “no.” Jensvold has charged that NIMH engages in a systematic pattern of sex discrimination against women researchers working on women’s health issues. She has a compelling case. In a lawsuit filed in federal district court in Maryland, she alleges that her male superior harassed her, denied her opportunities for research and writing provided to male fellows, fired her before she could complete her third and final year of the fellowship program, and attempted to destroy her promising academic career. To hear Dr. Jensvold recount her experience is chilling.
“I was a medical fellow at the National Institute of Mental Health from July 1987 to July 1989.1 was the only woman among a group of male physicians studying premenstrual syndrome. I had a background in studying PMS and was looking forward to studying it at this institution where I’d be able to do biological psychiatry research which really can’t be done elsewhere. This was the premier place to be doing what I want to be trained in. So I was optimistic starting at NIMH, but what I found was that it was, in fact, two years of hell.
“It was layer upon layer of awful, painful experiences,” she recalls. “Over the course of six months, my boss told me that the reason I was being excluded from doing valued things was because I’m competent and attractive.”
Then, at the end of her second year, Jensvold was “non-renewed,” a technical term for fired. It was then that she decided to file an Equal Employment Opportunities Commission (EEOC) complaint, believing that an objective third party could help to negotiate a third year so that she could write up her research. Following the filing of the complaint, serious retaliation set in. According to Jensvold, her boss began to claim that she was incompetent and didn’t deserve to have a final year. “At the same time, of course, barriers were being put up so that it was impossible for me to complete anything,” she says.
To add insult to injury, Jensvold had previously been ordered to undergo psychotherapy by her boss. “I was given a list of psychotherapists to start with, all of whom were male, and when I asked whether a female psychiatrist could be recommended, I was told that, no, it wasn’t possible to recommend a female psychiatrist. So, I went into psychotherapy with the number one person on his list, who turned out to be an employee of NIMH, working out of my boss’ office, and who refused even to assure me of confidentiality.”
Margaret Jensvold was the third woman to do menstrual cycle research at NIMH. The other two had been treated similarly and the first one had, in fact, filed a successful complaint against NIMH. But rather than serve as a deterrent, it has simply fueled the fire. “The fact that all of this was happening at the National Institute of Mental Health, the premier organization for research on mental health, and the fact that it was happening in the women’s mental health programs, that this was the clinical director of NIMH, this was the person who was responsible for the quality of clinical care of all of intramural NIMH, this was just extraordinary to me, and impossible simply to walk away from,” says Jensvold.
Jensvold filed suit because she felt that any woman in her position would be treated in the same way. “There’s a need for institutions to no longer tolerate harassment and discrimination. There’s an absolute need for institutions to indicate that they really do care about the careers and well-being of their women researchers, and of their women employees.”
Jensvold also offers an historical perspective on current events. “I think we’ve gone through two phases and now we’re in a third phase. In the 1950s and early ’60s there was an emphasis on the fact that women and men were different biologically, and those biological differences were used as justification for excluding women from positions of responsibility. And then the women’s movement of the ’60s and ’70s came along, and downplayed biological differences. Unfortunately, what we’re finding now, as a result of this, is that we’ve gotten to a point where there are men still in positions of responsibility who are choosing which research to do, which research subjects to use, and saying that we can extrapolate from men to women. So now we’re into a third phase where we’re saying, ‘Hey, wait a minute. There are biological differences. They are significant. They do need to be studied. And women and men are both suffering from the lack of recognition of the diversity.'”
Jensvold continues: “Part of what discouraged me so much about my experiences at NIMH was that these were my peers doing this. This was really my generation doing this to me, men who were children in the ’50s and early ’60s. They grew up assuming white male privilege, and they grew up at a time when the white male privilege came into question.
And so now here they are, coming into positions of authority, and when a woman comes along expecting that she has an equal shot at tenure, their gut level response is, what are you talking about, you impudent thing! I think there is a very deep anger there that they would never articulate.” (Lana Skirbol, Director of the Office of Women’s Research Issues at the Alcohol, Mental Health and Drug Abuse Administration (AMHDAA), which oversees NIMH, said she could not discuss Jensvold’s case since it is active.)
Jensvold is hoping that the National Institute of Mental Health will benefit from the scrutiny of NIH. She notes that NIMH has existed since the 1940s, but no woman there has ever gotten tenure through the fellowship track. Only one woman has ever gotten tenure at all, and she was brought in to do research in child psychiatry. The first woman ever to complete three years of fellowship at NIMH was Jean Hamilton, who was there from 1980-83. Hamilton was Jensvold’s predecessor, and the woman who won the first sex discrimination case against NIMH.
Jensvold thinks the actions of the Congressional Caucus for Women’s Issues are important and that the formation of the NIH office for research on women’s health is a hopeful sign. At the same time, she is cautious about the latter’s ability to influence future events. “It’s good that the office has been founded. It’s wonderful that they’ve developed plans to include women as research subjects. But it will take time to see how much these changes will actually achieve. And it’s very important that over time the office does, in fact, advocate for women as opposed to simply representing NIH or being apologists for NIH.”
Asked what role her office would play in discrimination cases before NIH, Ruth Kirschstein, of the Office for Women’s Health Research, said: “The Office is going to have the responsibility to assure that there be enough effort involved in research on women’s health. It is not an equal employment office, and does not get involved in such things.”
If Pat Schroeder and Olympia Snowe have their way, that may change. At a press conference last winter, Schroeder said, “One can’t ask about what research is being done without asking who is deciding the important questions and who is doing the research.” Snowe added, “We believe that women scientists have a great deal to add to policy decisions about the future of science, technology and medicine. A failure to use the many excellent women scientists, physicians and engineers is a waste of talent which our country cannot afford.”
Elayne Clift is a journalist specializing in women, health, environment and international development issues.