Book Review: One of Us : Conjoined Twins and the Future of Normal by Alice Domurat Dreger
This book raises questions about peoples’ reactions to conjoined twins that may have important implications for many other unusual traits. It eloquently questions common assumptions about the desire to seem normal. It has led me to wonder about the extent to which healthcare is used to make people more normal at the cost of making them less healthy.
The book presents strong evidence that conjoined twins who remain conjoined are at least as well off as those who are separated, and some evidence that separations reduce the twins’ life expectancy, possibly by a significant amount.
Remarkably, of the twins who remained conjoined to adulthood, only one pair requested separation (they didn’t survive it), and among those whose refused separation are a number whose twin had just died (which meant that separation appeared to offer the only chance for the remaining twin to survive).
This doesn’t mean conjoined twins are better off that way (those who have been separated seem equally satisfied with their status), but it strongly suggests that decisions to perform separations are motivated by something other than concern over the twins wellbeing. And it suggests that people who claim things like “The proposed operation would give these children’s bodies the integrity that nature denied them” are imposing their values on others in ways which would be considered unacceptable if the victims had a little political power.
The book reports a fair number of statements by doctors (and occasionally parents) which suggest they consider a normal appearance worth risking health to achieve. The book also theorizes that having a normal child is an important enough part of parents’ identity to override their interest in their children’s’ wellbeing. The book also reports some indications that surgeons are biased toward surgery for unusual problems by the fame if can bring them.
Unfortunately, there isn’t as much evidence as there ought to be about the health effects of separations. The book claims (plausibly, but without supporting references), that “most medicine is not yet evidence-based”, with most surgical decisions being based on storytelling rather than careful studies.
The book raises some important questions about cases where doctors think the only way to save one twin is to kill the other. The author points out some strong similarities between the medical killing that is done in some of these cases and a hypothetical case where a heart is taken from a live singleton (i.e. not conjoined) donor to save another (which all would agree is wrong). One difference that she fails to consider is that if you consider the heart property, it looks like jointly owned property in one case and individually owned property in the other, and we should expect some differences to result from that (although doctors may still be more willing to kill one twin than that perspective would justify).
One interesting example that the book provides of medicalizing a difference is the attempt to get doctors to recognize Drapetomania, a “disease” which causes slaves to run away.
How widespread is the practice of impairing health to make people more normal? Surgeries on intersex children probably create modest health risks. Commonly used medicines to deal with ordinary colds suppress annoying symptoms that are tools the body uses to fight the disease, and tend to make the disease last longer (see the book Why We Get Sick : The New Science of Darwinian Medicine by Randolph Nesse). A child with 3 arms makes doctors want to chop it off, presumably at some risk.
Are these part of a wider pattern that would help explain why increased healthcare spending doesn’t seem to make us healthier?
On a loosely related note, I just ran across an unsettling complaint that Prozac seems to help too many people:
“There’s nobody nonsyndromal. You can give Prozac to anyone you want.”
Which is anathema to what medical science is supposed to be about. “We try to convince people there’s some specificity to what we do,” says Millman. “But this is embarrassing.”
Is this an indication that people don’t want drugs to do anything other than treat abnormal conditions (i.e. that they consider it wrong to improve on normal conditions)? Or does it reflect concern that there will be less demand for doctors’ skills if no diagnosis is relevant to the decision to use it? (This seems less likely given that they can still play a role in monitoring side effects).
I was inspired to read this book by a brief comment from Robin Zebrowski at the recent Human Enhancement Conference.