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Facts are sacred

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David Dobbs
GALILEO'S MIDDLE FINGER
Heretics, Activists, and the Search for Justice in Science
Alice Dreger
Penguin Press;
337 pages; $27.95

"Soon enough," Alice Dreger writes at the beginning of her romp of a book, "I will get to the death threats, the sex charges, the alleged genocides, the epidemics, the alien abductees, the anti-lesbian drug, the unethical ethicists, the fight with Martina Navratilova and, of course, Galileo's middle finger. But first I have to tell you a little bit about how I got into this mess."

As is so often the case, what got Ms Dreger into trouble was sex. A historian of science and medicine, she criticised a group of transgender activists who had attacked a sex researcher for his findings on why some people want to change gender. Having hounded the researcher mercilessly, the activists attacked Ms Dreger, too. The bad news is that this was hard on Ms Dreger. (More on that momentarily. For now, I'll just note they called her son a "womb turd".) The good news is that from this mess emerged not only a sharp, disruptive scholar but this smart, delightful book.

Galileo's Middle Finger is many things: a rant, a manifesto, a treasury of evocative new terms (sissyphobia, autogynephilia, phall-o-meter) and an account of the author's transformation "from an activist going after establishment scientists into an aide-de-camp to scientists who found themselves the target of activists like me" - and back again.

As its title suggests, the book is also a defiant gesture aimed at those who would deny empiricism. Yet this middle finger (Galileo's actual middle finger, in fact, which Ms Dreger stumbles across in Italy) is raised in affirmation as well. It points toward the stars that confirmed his cosmology - and toward empiricism's power to create a fairer, more rational society. For Galileo is famous not just because he saw how the stars move. He's famous because he insisted we see for ourselves how the world works, share what we see and shape our society accordingly.

Ms Dreger brings a similar mission to activism and ethics. She insists that both be based on evidence, so that we respond to problems as they really are, rather than as we'd like to see them.

Of course, as Galileo and Ms Dreger both found out the hard way, facts can anger people in power. This book's energising discovery is that sometimes those wielding such power are not the usual suspects, such as Big Brother or Big Business, but self-appointed guardians of the non-powerful. In other words: activists.

Ms Dreger learnt this from her own activism. Her speciality is how Western medicine has treated people with "ambiguous" genitals, known historically as hermaphrodites and more recently as intersex people.

Ms Dreger became an activist because even after it was accepted that sex is a many-splintered thing, far more variegated than our binary ideas allow, surgeons continued to "fix" intersex infants. No matter that such surgery addressed social rather than medical concerns, dulled or destroyed sexual pleasure, violated every premise of informed consent and sometimes killed patients via complications from anaesthesia - all to normalise appearance.

Ms Dreger joined with Bo Laurent, the leader of the Intersex Society of North America, in a decade-long effort to persuade doctors to let intersex infants grow up and sort things out for themselves.

Her anti-activist phase began when she decided to defend the research psychologist J Michael Bailey, who created a firestorm with a 2003 book titled The Man Who Would Be Queen. The book, based on well-supported, peer-reviewed research by him and others, argued that some men want to change sex not simply because they are "born trapped in the wrong body", as Ms Dreger describes the common view, but because they were sexually aroused by the idea of themselves as women.

This notion enraged advocates who insisted that transsexuality came invariably from an unavoidable mind-body mismatch - a mistake of nature - and never from a variation in taste, which some might consider an indulgence. These advocates sought not only to refute Mr Bailey but to ruin him. When Ms Dreger defended him, they targeted her, too.

In the end, as Ms Dreger tells it, she and Mr Bailey won a rough victory. When Ms Dreger's book-length paper on the issue was written up warmly in The Times, formerly gun-shy allies were encouraged to speak out.

The fracas taught Ms Dreger a sombre lesson: when a motivated group with a playbook of ugly tactics spots a scientific finding they don't like, they can often dominate public discussion in a way that replaces a factual story with a false one. Only scientists of Galilean character can weather the storm. And even they, like Galileo, might be effectively exiled.

Ms Dreger is not suggesting, as others are lately, that public shaming is out of control. She's well aware that some researchers abuse their positions. She knows firsthand what it is like to take on a researcher. The effort is enormous - and it might very well fail.

She illustrates this through the unsettling case of Maria New, a prominent paediatrician at the Icahn School of Medicine at Mount Sinai in New York. For almost three decades, Ms New has been conducting what Ms Dreger sees as a poorly regulated and dangerous experiment on the most defenceless patients: foetuses.

Ms New is attempting to prevent a hormonal condition called congenital adrenal hyperplasia (CAH). In females, CAH sometimes creates masculinised genitalia and, in some cases, medical issues that are usually manageable. If genetic tests find a mother at risk of giving birth to such a child, Ms New prescribes her a powerful steroid, dexamethasone, that crosses the placental barrier to bathe embryo and foetus in a hormone meant to make development more typical.

According to Ms Dreger, however, the genetic maths involved means that only one in eight of those treated stands at actual risk. Meanwhile, eight out of eight are exposed to a hormone that the sparse literature suggests may create developmental problems that include mood disorders and severe cognitive deficits.

We don't know how common such problems are, Ms Dreger says, because neither Ms New nor anyone else has done thorough studies on efficacy or adverse effects. This, she asserts, allows Ms New to deal from both sides of a rigged deck. Even as Ms New tells patients that in years of prescribing dexamethasone she has seen no harmful effects, she asks for and gets money from the National Institutes of Health to see if the drug is safe.

Clearly, we need people like Ms Dreger defending empiricism and calling out fraud. But how do we discern the charlatans? How do we collar the guilty without persecuting the innocent?

The easy (and correct) answer is that it's incredibly difficult. Ms Dreger ends by noting that we usually get it right - but only after tempers have cooled, values have changed, the powerful have weakened and the stakes are less urgent. We get it right, in other words, only when we view such disputes the way historians do.


© The New York Times News Service 2015
 

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First Published: Apr 19 2015 | 10:25 PM IST

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