Bioethics Blogs

Body Integrity: Choice vs Design?

In my search for new topics I ran across the obscure “Body Integrity Identity Disorder,” or BIID.  This is described as a condition—if, indeed, it is a legitimate diagnosis—in which a person is troubled by the presence of a perfectly healthy body part, nominally a limb, and wants it amputated to restore a sense of personal wholeness.  One 2009 review argues that this is a rare but definable illness in which the sufferer makes a reasonable request for “treatment” that ought to be not only taken seriously, but honored, in select cases.

Briefly, the author of the paper in question, one Christopher Ryan, argues that a person with BIID is not necessarily psychotic (BIID is proposed as a diagnosis of exclusion, after the clinician has considered psychosis and other psychiatric conditions), and appears to be normal but has “clinically significant” impairment in personal functioning.  Central to the argument is the assertion that the person with putative BIID is not delusional.  Delusions rarely arise in otherwise normal people.  They are demonstrably false (e.g., “my relatives have been replaced by impostors”) while the BIID claim is inward and subjective (“my personal sense of integrity is violated”), and as such, is unassailable.  People with BIID keep it a secret, while delusional people never let you hear the end of it.  (Did I mention Area 51?)   In short, people with BIID are not crazy, and should not be so labeled.

BIID is not exactly presented as a major public health problem.  In his paper, Ryan refers to five reported or known cases.  Five.  I must say, with so few cases, I wonder whether they might not be 5 cases of mis-diagnosis rather than the emergence of a new disease that had not yet been formally recognized.  At the time of Ryan’s paper, no specific associated brain injury had been reported.  (I confess I have not attempted a search of the more recent literature.  This is a blog post, not a review article.)

Healthy limb amputation, Ryan argued, is not only ethically permissible but required in select cases on grounds of autonomy and net benefit to the patient.  Do you object?  On what grounds?  “Do no harm” begs the question—a risk-benefit assessment is required.  “It’s illegal?”  Shouldn’t be.  “We don’t know enough about it?”  We should collect the data; in fact, BIID should be a formally reportable condition with a data registry.  (Can we get that for abortion and oocyte donation, BTW?  Oh, forgive me [slapping my own wrist].)  “We should err on the side of caution?”  But nothing else works—notably not cognitive therapy.  (In my world, however, we don’t give up on an experimental drug if it fails the first 5 times it’s tried—we get more data before abandoning it.)  “There will be flood of requests for amputation?”  Hardly likely—if anything, a trickle, provided the diagnosis is applied with cautious medical judgment (emphasis mine), and the cost to society of making people disabled will be small if healthy limb amputation is limited to people with “genuine” (Ryan’s word, not mine) BIID.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.