Dan Vorhaus gives a thorough history of the FDA and direct to consumer genetic testing. And here, he gets momentarily interviewed about the “safety and effectiveness and wisdom of personal genomics kits.” (Wait, how might these test kits harm consumers and what exactly are they supposed to effect? And wisdom! I keep seeing that astonishing conversation, as if we were discussing kindergarteners with sharp knives.)

The bottom line is that FDA regulation of genomics testing amounts to FDA regulation of genomic data. The interesting question is to whom that data belongs. And the answer is me! I can confidently say my genomic data belongs to me! I can choose to share it with my doctor or my health insurance company (hahaha!) or the rest of the world, but I’ll be damned if the FDA gets to make those decisions for me. This is not about medical treatments, this is about who owns the genomic description of my body. And eventually the epigenomic description of my body⁰¹ and the catalogue of the unique pattern of symbiotic microbes for whom I am the universe, and… The FDA ought to regulate medical therapies, including those based on genomic data, but regulating the morality and existence of data itself is really fraught. I suppose the problem is partially in the precedent of propagating my personal data (health records and lab work) throughout my healthcare provider’s and insurer’s paper and digital systems⁰² and only then dispensing bits to me more or less at the discretion of each, but I’ve never been convinced that’s very effective or safe. We need more than the legal right to extract own data from that labyrinth. We need the ability to acquire (or decline to acquire!) data about ourselves and to share it at our own discretion.

~

Lizzy Skurnick on blogging. She comes out swinging.

You link wrong. You’re not funny. Often, you’re boring. You think posts are something you “pitch”. You think posts should be timely, or related to news. You think other bloggers should respond to other bloggers, preferably in chin-stroking ways like, “I appreciate your thoughts, Gwendolyn, yet I…” You want headlines maximized for SEO. You want things to have a peg, you want to call sources for comments, you pester your readers for response instead of allowing readers to want to respond.

This kinds of fits with my growing discomfort around professional blogging as well. A few old timers manage to pull it off pretty elegantly as an end in itself (Good for you, Kottke!), but often the barrage of ads, SEO optimized headings, sponsored posts, and froth of affiliate links tweaks something in me that strengthens and exercises my capacity for cynicism. I don’t know what the answer is yet for how writers make a living writing online. But I don’t have to unravel it all logically within a taxonomy of carefully considered circumstances. It’s not a moral response. I just know that it does something I don’t like to me as a reader. I don’t ever want to slip from happy skepticism into anxious suspicion, and without giving it much thought, I avoid places where I have to breathe in all that stuff while I read. It smells bad. I wander off after not very long.