Personal Germanics

Last week I was in Bad Nauheim (a lovely town full of spas and gardens–highly recommended) searching for Elvis and addressing the German CFO – Summit. “Why,” I wondered, “would German CFOs be interested in hearing about personal genomics? Surely they knew better than to sink their hard-won Euros into spit kits and exomes?”

Indeed they did. My host, an all-around mensch, explained that the theme of this year’s meeting was “the transparent self.” When I informed him that, as far as human DNA was concerned, our selves were still pretty damn opaque, his reaction was not disappointment with the pace of the genome sciences, but relief that most of our genomic information was not meaningful enough upon which to make systematic eugenic or discriminatory decisions (Mendelian reproductive screening, forensics and a couple of other things notwithstanding).

It seemed as though many (most?) of the attendees shared this view. No one mentioned history. No one needed to. Germany’s 20th-century abuse of genetics had profound, horrific, unfathomable consequences. That perverted, wrong-headed theories of heredity–some of which were “perfected” in the US–gave the Nazis cover for genocide is our field’s single greatest failing.

And so the irony was not lost on me: Here I was, an American Jew who had had family members perish in the Holocaust, telling the Germans that genetics was cool and nothing to be afraid of…It was a tough sell (even in the wake of the first published German genome).

“We–all Germans–carry an enormous burden,” my host said later. “As we should.” He tried to articulate the difficulty of reconciling love for one’s parents and grandparents with the knowledge of what they did–or didn’t do–during the war. “The New Eugenics” is by now an old bioethics trope, but for many Germans it is hardly an academic abstraction.

That said, I stand by what I’ve been saying for a while now: genetics* is too important to be left to geneticists…or primary care doctors or academic medical centers or IRBs or government agencies or multinational corporations. If we–individuals, families and communities–want this century to play out differently than the last one, then it is incumbent upon us to assert control over our own cells and the information inside them.

*and by this I mean to include genomics, phenotypes and all other human biological data
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2 Responses to Personal Germanics

  1. Courtney Scott says:

    You have no idea the pains I have taken to try and finish your book… I found my first copy at Powell’s in Portland, OR while visiting my brother in August. In order to get home to Vermont before the Irene cancellations started trickling in, I took a red eye a night early. In my groggy, sleepless stupor, I left your book in the seat pocket in front of me. I realized this once I boarded my next plane. Have you ever tried to retrieve anything from Delta Airlines lost and found? It’s pretty useless to bother. I’ve decided to just not lose things anymore.

    My second copy was purchased at amazon.com and I promptly put several identifiers on the inside cover. “I belong to…Please help me find my way home if I get lost!” I am nearly done reading. I’m reading far too many books right now, rewiring my basement, and have numerous overly-ambitious projects going on at work. What I’ve read so far has been amazing. It’s like having coffee with someone I know really well and swapping lab stories. You’re a rock star (but not in the garage band sense of the term).

    I just wanted to let you know that you also rekindled my PGP fervor. I did all but finish my application about a year ago and got busy…just submitted it today. Thanks for sharing your story. You’re an inspiration.

  2. mangrist says:

    Hi Courtney:

    That’s very sweet–thanks so much! I’m sorry that you’ve had to traverse so many hurdles to get through HiaHB, but as someone who loses his keys and sunglasses with alarming regularity, I can empathize. Sounds like you’re a good candidate for the PGP–let me know how it goes!

    All best,
    Misha