Sunday, March 24, 2013

Belated Thoughts on Rob Portman (and Henrietta Lacks, Too)

It's been just about ten days since the announcement by Rob Portman that his previously-held opposition to gay marriage has melted away following the acceptance that his son is gay. There was a minor flurry of commentary and people have moved on to matters both weightier (Cyprus, Middle East) and less so (the aptly-named Shockers). So I'm a touch behind on weighing in on this; such is the life of an intermittent blogger. But so far I haven't seen anyone make the point I wanted to so here goes.

Matt Yglesias of Slate confesses to annoyance with the narcissism of Portman's stance that he had to arrive at gay marriage support only through direct experience. But there's more here than mere narcissism, and it's indicative of the general Republican approach to policy questions. The post-Nixonian Team Elephant doesn't employ reason as the primary tool to solve societal problems. It's the price of the Southern Strategy that shifted political power to the Republicans for nearly two generations. (An emblem: whatever one may think of her, there once was Jean Kirkpatrick addressing a Republican National Convention; now Sarah Palin stands and opines before them to yowling approval.)

Rather than providing a heartwarming tale about new found openness, Portman's reversal only serves to illustrate that very troubling underlying tendency. He didn't simply think about the issue and come to support gay rights. It's not like he hasn't had multiple opportunities to think this matter through. Instead it took something visceral to get him to budge from his bigotry. Although he should surely be commended for embracing a more progressive approach--he could have, in the manner of so many parents, simply cast his son away for either political expedience or genuine hatred or both, and did not--it's very unclear whether that process will be of any help where popular Republican sentiment still skews medieval, such as the understanding of evolution or the reality of climate change or the importance of evidence in public discourse.

As for Henrietta Lacks, today's New York Times brings word that a European research team last week had published Ms. Lacks's genome without anyone's consent. (If you don't know the story, Rebecca Skloot's The Immortal Life of Henrietta Lacks is a must-read; Skloot is also the author of today's Times piece.) There is a whiff of outrage in Skloot's prose that no consent was sought, although precisely how that could be accomplished is anyone's guess, as Lacks died over 60 years ago, long before current standards of consent even remotely began to address issues like this.

Skloot proposes that the family should have served as the surrogate for consent, but this seems at best to be an unwieldy solution. Who counts as family for a woman who passed away in 1951? What happens when there is a split decision? Based on my experiences with families of patients in end-of-life situations in ICUs, split decisions are the norm rather than the exception. And the publication of Lacks's genome has real--though difficult to quantify--scientific value, as her cells, the so-called "HeLa" cells, remain the workhorse cell line that forms the backbone of all biomedical research on the planet.

I have no idea how this is to be addressed. I am in agreement with Skloot that scientists need to be exquisitely sensitive to these issues. But I fear that our best intentions of outreach may not be sufficient to overcome objections to research--and HeLa cell research really is critical, and has the potential to improve or even save the lives of many people in the future.