Over at David Dobbs’ weblog Laura Hercher has a guest post up with the heading The Case for Selective Paternalism in Genetic Testing. Here are some relevant sections:
Which brings me back to this issue of paternalism. I agree that it makes no sense to put up obstacles for inquisitive and motivated individuals who wish to query their genome for information, however laced with uncertainty or peril. But forgive us if our first thoughts are often about how to help (yes, and to protect) the patients we see, in the medical setting. Science literacy is rare. The desire to use web-based tools to analyze their own DNA sequence is vanishingly rare. And a sentence like “Your risk of type II diabetes is decreased by the allele that you carry, in a gene that accounts for an estimated 1.5% of the heritability of the disease” is regularly interpreted as “You will not get type II diabetes.” So we worry about the effect that getting this information may have on the people who live where the sky is blue and the sun is yellow. Sue us.
So, yes – more information, not less, is the way of the future, for so many reasons. But I will throw in a plea for understanding that sometimes the opposition is not merely protecting an information fiefdom, but responding to their own previous experience. Sometimes, I get a little protective. I guess that’s paternalism. I plead guilty – guilty, with an explanation.
Actually, I don’t think that’s paternalism. Hercher’s whole post is bathed in a sentiment of protective paternalism, but there’s really little concrete response and rejection of the positions of those of us who lean toward greater information dissemination. In fact I’m even more convinced that genuine defenders of a paternalistic position are acting out of arrogance and self-interest. Their arguments are qualitatively different from the ones that Hercher offers above.
Unlike many people I am willing to cop to the reality that most people are quite stupid and ignorant. In fact, I would class all of the human race aside from analytical engines like Ed Witten in this category. But on a finer scale 25% of American don’t read any books in a given year, and individuals with undergraduate degrees in genetics can be under the mistaken impression that ancestral information is encoded only in the Y and mtDNA, rather than the whole genome (true story!). But this widespread ignorance and stupidity is one reason that I favor open access to genetic information: many ‘gatekeepers’ are no more well informed. Additionally, in a world of probiotics and nutritional supplements holding genetic information back in the interests of the public’s health due to their credulity strikes me as like holding back the waters of a cracking dam with one’s fingers. Rather than censor or cordon the information off, better ways have to be developed to appropriately communicate the information to the public. Understanding is an important good, but more critically in the area of health people just need to make the choices most optimal for them.
The example of Huntington’s disease is I think an important one, as it reiterates the importance of professionals who can facilitate the flow (or lack thereof if the possible patients so choose!) of information. As Americans we can buy and sell our own stocks, but often people rely on intermediaries and specialists. There’s no mandate, but it is often a mark of seriousness to consult experts. Granted, there will always be those who foolishly plunge headlong into adventures without any competence, but such as it always has been.
Addendum: I am actually more open to paternalism than you might think. But paternalism has be expressed and implemented on a macrosocial level. Until that happens I am curious why people would want to make exceptions for the ideal of self-actualizing individualism in the cases DNA is at issue.