Galileo's Middle Finger (34 page)

When I got together with Mike over a tense drink to talk about it, I asked him what he was thinking to allow a live sex demonstration in the Ryan Family Auditorium on Northwestern’s Evanston campus. He replied, “Well, Alice, the fucksaw couple asked me before
that
if they could do
fire play
”—sex games involving fire—“and I answered, ‘No! That’ll get me in trouble!’” Hearing this, I involuntarily smacked him in the head. The only upside was that Aron took to referring to Mike as the Fucksaw, simplifying certain family conversations, as we have three friends named Mike. Predictably, various academics tried to defend the fucksaw show by appealing to “academic freedom” and “freedom of speech.” By Mike’s own admission, however, he’d put no more than five minutes of thought into the decision to allow this demonstration. For an act to be protected by academic freedom, it really should have arisen from actual academic thought. Allowing the fucksaw demo was just dumb, and I think Mike ultimately agreed, though as usual he would say it was a dumb choice only because the general public is so incredibly stupid about sex and, as usual, he’d have a point. The students in Mike’s class not only didn’t object to the demonstration (which they’d been allowed to skip if they wished); many actively defended him and the course to the media. Nevertheless, the Northwestern University administration responded to the kerfuffle by taking the course away from Bailey. It is now taught by someone more politically correct. (Not me.) Mike’s son Drew has finished his PhD and is now an assistant professor studying the evolution of sex differences.

What about Napoleon Chagnon? In 2010, the journal
Human Nature
peer-reviewed and published my findings about what the American Anthropological Association did to aid and abet Patrick Tierney in smearing Chagnon and James Neel, and in the cycle immediately following publication of my exposé, Chagnon was finally elected to the National Academy of Sciences. Shortly after that, he finally finished his decade-in-the-making memoir, publishing it under the title
Noble Savages
: My Life Among Two Dangerous Tribes—the Yanomamö and the Anthropologists.
Emerging from the northern Michigan woods to return to academia, in 2012 Chagnon accepted a new professorship at the University of Missouri–Columbia (in Craig Palmer’s department). With the help of his colleague Ray Hames of the University of Nebraska, Chagnon is finally back at work processing the mountains of data he collected among the Yanomamö.

Several of the anthropologists I criticized in my work are still complaining that while I may have proved that Neel and Chagnon were wrongly accused of genocide, I haven’t adequately investigated Chagnon’s other putative ethical transgressions, such as allegedly manufacturing scenes for documentaries and cavorting with habitat-destroying gold miners. Were these charges coming from people who hadn’t first cried genocide, I might be more inclined to pursue them. As it is, the AAA has yet to apologize to Chagnon for what happened under its auspices. Chagnon used a lawyer I recommended to him to finally force the AAA to heed the vote of its membership and take down from its Web site the El Dorado Task Force Report, which included the claim that Chagnon had paid his Yanomamö subjects to murder each other.

Today, the Yanomamö are in dire straights. As recently reported in
The
Washington Post
, “a new bill pending before Brazil’s Chamber of Deputies would proclaim a ‘public interest’ in allowing Indian reserves [like that on which the Yanomamö live] to be used for farming, mining, oil and gas pipelines, hydroelectric dams, human settlements and military operations.” This seems guaranteed to end their way of life.

It’s difficult for me to explain what has happened to the
American Journal of Bioethics
(
AJOB
), if only because I don’t employ a research team to help me keep up with the journal’s scandals. I guess I should relay at least the fact that Glenn McGee—the ethically challenged
AJOB
editor who remained unmoved by our calls for conflict-of-interest disclosures on the dex papers—
ended up resigning
from
AJOB
in early 2012 after some of his critics discovered that he had started working as an executive for a Texas stem-cell therapy company named Celltex. Celltex licensed the wares of a Korean stem-cell outfit called RNL Bio, a company McGee had been defending in the press a year earlier, after two of RNL’s stem-cell patients
had mysteriously died
. Many folks in bioethics didn’t think it all that funny that a stem-cell executive was now running a prominent medical ethics journal, especially because his company appeared to be running afoul of FDA regulations. Not long after McGee relinquished his editorship of
AJOB,
he also quit Celltex, which was soon under
investigation by the FDA
. Before he left
AJOB,
McGee saw his third wife, the bioethicist Summer Johnson McGee, installed as coeditor in chief of
AJOB
along with a friend of McGee’s.

Summer herself resigned
just a few months later, on the heels of a Senate inquiry into a pain-medication scandal in which
AJOB
was implicated. The journal had published a couple of major pro-pain-medication articles without including information about the authors’ funding by the drugmakers whose wares they were advocating. (Yes, more undisclosed conflicts of interest.) Before Summer’s departure,
AJOB
had essentially been forced to publish
one of the longest postpublication conflict-of-interest disclosures anybody had ever seen. I never could convince the remaining editor—the McGees’ friend David Magnus, a bioethicist at Stanford—to fix any of the problems with the dex papers. Robert “Skip” Nelson, the FDA official who ran the investigation on prenatal dex, still works as a paid ethicist for the FDA and as an
AJOB
editor in chief.

Dix Poppas, the Cornell medical school pediatric urological surgeon who was “sensory-testing” little girls’ genitals after he surgically “feminized” them, is apparently still doing these surgeries. After we made complaints, Cornell successfully argued to the Office for Human Research Protections (OHRP) that Poppas’s work should not be of concern to them because it was not federally funded and because he was supposedly doing the genital stimulation tests as part of “normal” medical care. (OHRP regulates federally funded research, not ordinary medical care.) In 2014, Poppas was voted one of
New York Magazine
’s Best Doctors.

As to prenatal dexamethasone, I still think it is highly likely that many of the pregnant women guided into the intervention by Maria New never really understood they were in a high-risk experiment. In the United States patients of physicians like Poppas and New—vulnerable people who are called “patients” while in the clinic and then used retrospectively as research subjects by the same physicians—seem to be caught in a never-never land in terms of rights and protections. Maria New is still on faculty at Mount Sinai School of Medicine and the Web site of the Maria New Children’s Hormone Foundation continues to advertise prenatal dex as “safe for mother and child.” New’s long run of NIH funding seems to have finally come to a permanent end in 2008, about a year and a half before we raised our concerns to the Feds. I don’t know why it ended. She has been pursuing a new form of prenatal testing that would allow earlier diagnosis of fetal sex, potentially making it possible to avoid exposing any males “accidentally” to prenatal dexamethasone. The doctor who blew the whistle on New’s Cornell NIH research in 2003 now works at the University of Minnesota. She and her lawyers were awarded $877,000 from a $4.4 million settlement paid by Cornell.

Studies of prenatal glucocorticoids like dexamethasone continue to cause great concern.
One recent laboratory study
showed that fetal ovaries (obtained from aborted fetuses) that are treated with dexamethasone suffer cell death, a finding that suggests that female fetuses exposed to dexamethasone for CAH may grow up to be women with fertility problems. How painfully ironic given that one of the goals of New et al.’s intervention has been to make the females more likely to be mothers. A recent
study from Finland
shows an association between prenatal glucocorticoid exposure for risk of premature birth and negative mental-health effects, suggesting that “even at low dosages,” glucocorticoids can have “a programming effect on the fetal brain.” The authors of this study note that animal studies have also been pointing to this possibility.

Conspiracy theories are always tempting—they make one feel both clever and important—but there is little reason to believe that the feds did so little on prenatal dexamethasone only because of Robert “Skip” Nelson’s ties to the
AJOB
gang. Thanks to the independent analysis of a dogged reporter named
Theresa Defino
, it’s now clear that dex was no special case. The Office for Human Research Protections simply is no longer doing its job. While legitimate complaints have been arriving to OHRP’s offices at a steady pace over the last several years, under the current directorship of Jerry Menikoff, OHRP has been opening fewer investigations, issuing fewer determination letters (findings of wrongdoing), and even lately backing off from enforcement requirements when researchers complain. According to Defino, “prior to 2009 [OHRP] typically had 20 open cases per year.” But under Menikoff’s leadership, in all of 2013, OHRP opened
only one investigation
. These days, OHRP seems to be much more about protection of research than protection of research subjects. (Several people who have recently quit OHRP have agreed with this reading when I have put it to them.) Regulations stand as they’ve been, but in practice, protections for people who become subjects of medical research may be at their weakest in decades.

I’ve now met quite a few researchers who, like me, stumbled on an ethical travesty they tried to stop, and like many of them, I wish I could let it go but feel that doing so would be irresponsible. I still have to remind myself regularly that the fact that we failed to get the federal government to act on dex doesn’t mean we failed. The work my colleagues and I have done has made it impossible for a physician or a family doing basic Internet research on prenatal dexamethasone for CAH not to find out that it is controversial and involves troubling risks and unknowns. Of course, one would rather such information were made available more directly, so I’m still writing to textbook and journal editors, asking them to correct misrepresentations of the intervention and presenting my findings to physicians at medical schools. I also continue to track the history of dex by all the means available to me, including FOIA.

When I found out that prenatal dex was being used on a hunch with the goal of miscarriage prevention by IVF doctors, I relayed the news to the women at DES Action, an activist group I had come to know via my dex work. Recall that DES had also been used with the aim of preventing miscarriage. The women at DES Action were as stunned as I. A leader in the group,
Kari Christianson
(herself a woman prenatally exposed to DES), responded: “Again and again, unproven and unsafe drugs are available, offered and given to pregnant women without fully informed consent or understanding at a most vulnerable time. It is unconscionable. To think that we have learned little or nothing in the over forty years since DES health harm was brought to light is frightening beyond all reason.”

The problem here is an old one: People don’t really get that good intentions can’t save you from hell. So long as we believe that bad acts are committed only by evil people and that good people do only good, we will fail to see, believe, or prevent these kinds of travesties. Nowadays I feel as though 90 percent of my time talking to academics and activists is spent trying to convince them of this: The people who are against you are not necessarily evil, and your own acts are not necessarily good. That’s why we still need both scholars and activists. It’s not easy to see what’s what in the heat of the moment, and we need people pushing for truth
and
for justice if we’re going to get both right.

But most people I run into aren’t like us historians. Most people I meet seem convinced that the goodness of their souls will keep them from committing bad acts. When they look back at history, they don’t see what we historians see—dumb tragedies. They see simple moral dramas, with predictable characters enacting easy stories of good and evil. They don’t understand that
the Nazis
probably didn’t think they were “Nazis.”

Everybody knows the most famous line about history—Santayana’s “Those who cannot remember the past are condemned to repeat it.” But if this project has taught me anything, it’s this: People don’t want to listen to us historians and our warnings. People don’t believe us when we come in at the start or the middle. They believe us only way after the end, if then. I’m learning to accept the fact that we are almost always too late. We can bear witness
afterward, of course. And witnessing matters. But so many days, I find myself selfishly wishing that witnessing felt like enough.

This book, which revolves around a meditation on a scientist whose work depended in large part on patrons, would have itself been impossible had I not had a faithful patron who has financially supported my work since I gave up tenure in 2004. Aron Sousa has supplied not only our son’s college fund, two roofs (our house and my writing cottage), three squares, and cash for my lawyers and research trips, he has also provided life-saving companionship, laundry and cooking, editing of unclear drafts and crazy thoughts, a wonderful second family, and a consistent mandate that I should do what matters instead of what pays. I only wish my friends would stop asking what I’ve done to deserve him. (I have no answer.)

In 2008, the John Simon Guggenheim Foundation awarded me a fellowship to work on this book. I think that if they had not, I would never have had the guts to attempt this particular project. Moreover, if they had expected me, as many funders do, to complete the project in one year, I would never have learned what I have. I will always be grateful to them for the vote of confidence and the long view of productivity, and grateful to the people who supported my Guggenheim application: Barron Lerner, Steve Pinker, Dan Savage, and Miriam Schuchman.

For three years, this project was supported by a human sexualities grant from the Provost’s Office of Northwestern University. I appreciate that financial support, as well as the administrative support given to me at Northwestern by Dan Linzer, Ray Curry, Kathryn Montgomery, and Tod Chambers. Ray and Kathryn in particular offered extraordinary amounts of psychological support, the kind you have to have to survive doing the kind of work I do in academia today. My colleagues and the staff in the Medical Humanities and Bioethics Program at Northwestern have been nothing short of amazing; thanks to Kathryn and Tod, Catherine Belling, Gretchen Case, Megan Crowley-Matoka, Sydney Halpern, Kristi Kirschner, Myria Knox, Bryan Morrison, Debjani Mukherjee, Sarah Rodriguez, and Katie Watson. The staff of the Galter Library has been tremendously helpful in tracking down difficult to locate texts.

Over the years of my work, starting in graduate school, additional funding has been generously provided to me by the Woodrow Wilson Foundation, Indiana University, Michigan State University, Cornell College, the California Endowment, the Gill Foundation, the Arcus Foundation, the National Endowment for the Humanities (through the Hastings Center), the Social Sciences and Humanities Research Council of Canada (through the Enhancement Technologies and Human Identity Working Group), and the Canadian Institutes of Health Research (through Impact Ethics: Making a Difference).

The Impact Ethics group has been critically important to my thinking processes in the last two years. I am especially grateful to Françoise Baylis, Jocelyn Downie, Barry Hoffmaster, and Leigh Turner. For help in thinking through and sometimes cowriting about the Bailey, Tierney, and/or dexamethasone projects, as well as pediatric normalizations, academic freedom, and research ethics, I am particularly grateful to Marc Breedlove, Jim Brown, Andrew Burnett, Ann Carmichael, Mike Carome, MK Czerwiec, Carl Elliott, Joel Frader, Ed Goldman, Phil Gruppuso, the late Mary Ann Harrell, Kelly Hills, Mark Hochhauser, Joel Howell, Cindy Jordan, Christine Kelsey, Rosa Lee Klaneski, Anne Lawrence, Hilde Lindemann, Ruth Macklin, Jamie Nelson, Nigel Paneth, Erik Parens, Bill Peace, Susan Reverby, John Schwartz, Lois Shepherd, Jason Stallman, the late Kiira Triea, Eric Vilain, Roger Webb, and Sid Wolfe. Research assistance for projects discussed in this book came from a delightful series of people who were or then became friends: Colleen Kiernan, Taylor Sale, Yorgos Strangas, and Val Thonger. For legal advice and representation, I am grateful to Karen Mayer at Penguin Press, Cathy Jacobs, Thad Morgan, and J. J. Burcham. Janet Green and Anne Tamar-Mattis turned out to be ideal company in the dexamethasone forest, and for her classy public leadership through that forest, I am also grateful to Hilde Lindemann. Ken Kipnis also deserves special mention, for making me both laugh and cry every time he wished me “strength to your arm.” My thanks also go to all the people who provided interviews and other source material, including especially Mary McCarthy, and all of the people who reviewed my manuscripts on these topics, including especially the journal editors Randy Cruz, Jane Lancaster, and Ken Zucker. I am also indebted to Doug Hume for his online “AnthroNiche” document collection.

I hope the text of this book at least hints at the gratitude I feel toward my parents for bringing me up with a sense of purpose. What I am sure is not clear in this book is how my siblings (including my “sisish”) and my friends have kept me sane and even laughing. In terms of “chosen” family, I am particularly grateful to Val Thonger and Ken Sperber, Libby Bogdan-Lovis and Bill Lovis, Danny Black, April G. K., April Herndon, Vic Loomis, Ellen Weissbrod, and Paul Vasey.

Perhaps the best thing about this work is the three close friends the three major projects in this book have brought me: Ray Blanchard, Ray Hames, and Ellen Feder. If Ellen had not been by my side through the entire dexamethasone affair, I think I might not have been able to continue that work. Her clarity, humility, and anger formed a guiding light for me. David Sandberg was already a friend when he pulled me into dex but, through that work, he became someone with whom I look forward to growing old and more crotchety.

Mark Oppenheimer did me the great good service of introducing me to Betsy Lerner, who was kind enough to become my agent and to be the person who shaped this project into something that a mainstream press would understand. She then arranged a contract with editor Colin Dickerman at Penguin Press, a dream come true. After Colin left, Jeff Alexander became the chief editor for the book, and, with the help of editorial assistants Sofia Groopman and Will Carnes, brought to the work the focus and clarity it had been needing. I cannot imagine a better agent-editor combination than Betsy and Jeff.

Finally, I would like to thank our son for his interest in and support of my work. It cannot have been easy to have grown up with this book, but somehow he has always managed to second his father’s vote of confidence in the work. I am so thankful to him for the way he has raised me.