In genetics, journalism on March 11, 2011 at 8:52 pm
So here we are again.
Last year, a Congressional panel met to discuss consumer genetic testing. Some of the speakers issued statements that were so factually inaccurate as to be offensive; then, they largely concluded that people should be protected from their own curiosity. This week, an FDA panel met to discuss consumer genetic testing. Some of the speakers issued statements that were factually inaccurate and in one case plain offensive; then, they largely concluded that people should be protected from their own curiosity.
When I wrote a six-part series about consumer genetic testing last year for Newsweek, I was not an advocate on either side. (At least I didn’t start out that way.) Now I find myself squarely in one camp and sorely disappointed in the way the dialogue on the issue has played out over the last few months. What motivated me to write about the issue in the first place was a feeling that consumers were being left out of a debate that was supposed to be about them. Critics in Congress and the GAO were concerned that people would mistakenly treat their necessarily incomplete genetic data sets as crystal balls, but how many customers were actually invited to the Congressional hearing to share how they might think about their results? None. This time around, at the public meeting, how many consumers were expressly invited to speak? None.
It’s hard to see how people in power could ever look fairly at consumer genetic testing, given that every time they tackle the issue they end up having the same conversation without bothering to get direct input from the people whose welfare they’re purporting to protect. UPDATE: After the meeting, the FDA held an official public comment period. This was a great way to to get consumer input, and the agency should be commended for it.
So here I am again, waving my hands and jumping up and down, trying to provide some of that input.
In genetics, journalism on December 22, 2010 at 1:39 pm
Note: This post is essentially “what we talk about when we talk about genetics.” If you want a more straightforward scientific rebuttal of the recent Bioscience Resource Project essay arguing that genes have little to no effect on who we are, go here, or, better yet, here, here, here, here, here, or here (last link in Italian).
Michael Pollan, the well-known writer on food and agriculture, is a smart guy. His arguments tend to be nuanced and grounded in common sense. I like his basic maxim on nutrition – “Eat food. Not too much. Mostly plants” – so much that I recently promoted it in a Newsweek cover story. He’s the last person I’d suspect of reactionary thinking, which is why I wish I didn’t have to say this: Michael Pollan has made a deeply unfortunate mistake.
A few days ago, speaking to his 43,000 followers on Twitter, Pollan linked to an essay written by an environmental advocacy group that spends much of its time fighting the depradations of Big Agriculture. Curiously, the essay wasn’t about ecological destruction or even about agriculture. It was about human genetics. It argued that since genetics currently can’t explain everything about inheritance, genes must not influence the development of disease, and thus the causes of illness must be overwhelmingly environmental (meaning “uninherited” as opposed to “caused by pollution,” though the latter category of factors is part of the former one). This was a little like arguing that your engine doesn’t power your car because sometimes it breaks down in a way that confuses your mechanic — and concluding that gasoline alone is sufficient to make a car with no engine run. But Pollan took the argument at face value. He said it showed “how the gene-disease paradigm appears to be collapsing.” He was troubled that its contentions apparently had gone unnoticed: “Why aren’t we hearing about this?!”
In journalism, psychology on November 7, 2010 at 6:16 pm
Slate ran a great piece on pediatric bipolar disorder this week, one that made a crucial but often overlooked point: “Normal families don’t seek out stigmatizing labels and give their kids scary drugs for the hell of it. They do these things because they are at wit’s end.” I had a similar thought in mind when I wrote what I consider my best work, an in-depth 2008 profile of a family. Here it is:
Max Blake was 7 the first time he tried to kill himself. He wrote a four-page will bequeathing his toys to his friends and jumped out his ground-floor bedroom window, falling six feet into his backyard, bruised but in one piece. Children don’t really know what death is, as the last page of Max’s will made clear: “If I’m still alive when I have grandchildren,” it began. But they know what unhappiness is and what it means to suffer. On a recent Monday afternoon, Max, now 10, was supposed to come home on the schoolbus, but a counselor summoned his mother at 2:15. When Amy Blake arrived at school, her son gave her the note that had prompted the call. “Dear Mommy & Daddy,” it read, “I am really feeling sad and depressed and lousy about myself. I love you but I still feel like I want to kill myself. I am really sad but I just want help to feel happy again. The reason I feel so bad is because I can’t sleep at night. And dad yells at me to just sleep at night. But, I can’t control it. It is not me that does control it. I don’t know what controls it, but it is not me. I really really need some help, love Max!!!!! I Love you Mommy I Love you Daddy.”