I went back to my mother
I said, “I’m crazy, Ma, help me”
She said, “I know how it feels, son,
‘Cause it runs in the family…”
- Pete Townshend, “The Real Me“
Saks knew she might pay a price for her candor. Would her hard-earned career come crashing down if people knew the real workings of her mind?
A colleague suggested that Saks write under a pseudonym. But that would send the wrong message, Saks explained.
“Elyn,” her colleague reasoned, “do you want to be known as a schizophrenic with a job?”
The fact that Saks waited until she was 51 (!) before “coming out” as a schizophrenic says something to me about the biggest potential stigmas attached to personal genomics. As uptight as we Americans are about sex, we seem to be even more hung up on brains. Jim Watson (whose own son, incidentally, has schizophrenia), is prepared to disclose his entire genome except for a single gene, the Alzheimer’s disease susceptibility locus APOE. When I interviewed him at Cold Spring Harbor in May and asked him why, he shrugged and said his maternal grandmother died of Alzheimer’s at eighty-three. “I don’t want to worry that every lapse in memory is the start of something,” he told me. (Of course, I’m thinking, “Dude. You’re almost eighty!“) And recently, a prominent genetic policy scholar surprised me by writing in an email that he wouldn’t want the world to know if he were homozygous for APOE4 or if he had a mutation in another Alzheimer’s susceptibility gene, PS1.
One of my fellow PGPers suggested that genes like APOE that affect brain function may be considered more important by those of us who are “knowledge workers.” And yeah, I suppose if I knew there was a good chance I’d wind up eating dinner through a straw, forgetting my closest friends and family, and wearing diapers for the rest of my adult life, I probably wouldn’t want to advertise it to the world.
But must I feel that way? What does it mean when Nobel laureates, to say nothing of garden-variety dorks like me, are so uncomfortable with even the possibilities of their own biology that they feel compelled to hide them, even from themselves? Aren’t we knowledge workers supposed to be the enlightened ones?