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.