An open mind
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“
This remarkable piece in the LA Times about legal scholar Elyn Saks, her battle with schizophrenia, and her decision to write a book about it, is a must-read:
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?
I work as an Assistant Professor in the Duke University Institute for Genome Sciences & Policy (although this site and its content are my own).
In 2007 I became the fourth subject in Harvard geneticist George Church's Personal Genome Project. As the PGP moves forward, I am chronicling the dawn of personal genomics, that is, people obtaining their genomic information for whatever reason(s) and figuring out what to do with it. I am interested in the relevant technologies and especially the attendant privacy and other ethical/legal/social issues.
This blog may also discuss some of my non-genome interests or, to paraphrase Dwight Yoakam, "Guitars, Cadillacs, hillbilly music, etc etc."
The header image comes from the Liz Lerman Dance Exchange's multimedia performance piece, "Ferocious Beauty: Genome."
September 10th, 2007 at 10:31 pm
I still remember when Ronald Reagan was diagnosed with Alzheimer’s. He wrote that farewell letter to the nation in 1994 and was never seen in public again and few were allowed to see him in person. So sad. Does this mean when we develop the disease we receive no comfort from anyone? I’d like to think that I wouldn’t keep it a secret because for as long as I possibly could, I’d want to spend time with people I love.
September 10th, 2007 at 11:07 pm
It will be curious to see what kinds of patterns emerge as people start getting their genomes done, and are faced with the questions of what they would like to keep a secret from themselves, from researchers, from any sort of public database that would intentionally link them to their sequence. What will be the most common things people don’t want to know? I had been thinking more about things like sexual & reproductive history. Alzheimer’s is a great example - something that compromises both mind and body, with lots of fear and social stigma as well….
September 10th, 2007 at 11:59 pm
The day will come when this identification WILL lead to prevention. Until that day fear will abound. I admire you.
-Steve
www.thegenesherpa.blogspot.com
September 13th, 2007 at 7:08 am
A solution could be if the geneticist (e.g. in a company focusing on personalized genetics) would ask the patients what kind of genes/diseases they’d be interested to hear.
Personally, I wouldn’t like to know about my ApoE status as long as there are no treatments…
Great post!
September 13th, 2007 at 12:26 pm
[…] Angrist, one of the lucky subjects in George Church’s Personal Genome Project, has a great post on your genes and Alzheimer’s disease. Would you like to know about your ApoE4 status as long as there are no treatments? Questions like […]
September 13th, 2007 at 2:33 pm
[…] Angrist, one of the lucky subjects in George Church’s Personal Genome Project, has a great post on your genes and Alzheimer’s disease. Would you like to know about your ApoE4 status as long as there are no treatments? Questions like […]
September 14th, 2007 at 3:35 am
[…] Berci comments: “Personally, I wouldn’t like to know about my ApoE status as long as there are no treatments… […]