With my Alzheimer’s results from a genetic company called 23andMe still unopened, I went back to the library and found a brand new book titled “Am I My Genes?”
The provocative subtitle is “Confronting Fate and Family Secrets in the Age of Genetic Testing.”
I doubt that the book’s author, a professor of psychiatry and biomedical ethics at Columbia named Dr. Robert L. Klitzman, came up with that flashy subtitle. His writing is plodding and cautious; getting through his book takes patience.
His angle is interesting, however. What he has done is interview people in three groups affected by genetic diseases to learn about their experience.
The diseases are a lung ailment (Alpha-1 antitrypsin deficiency), gene-related breast cancer (BRCA-1 and BRCA-2) and Huntington’s Disease.
For the first two diseases, treatments exist, although they are difficult (think Angelina Jolie), while victims of Huntington’s suffer devastating motor and mental losses and usually die young. Huntington’s passes to 50 percent of a patient’s offspring and is incurable.
Klitzman’s interview questions range from “Should I get tested?” to “What does my risk really mean?” to “Should I have children?”
If genetic testing is coming at us like a flood (and I think it is), Klitzman has investigated a few early side streams and revealed problems I hadn’t anticipated.
For example, if you discover that you carry a gene for a serious disease, say BRCA-1 for breast cancer, and you believe it’s good to know about this in advance, who else should you tell? Most (but not all) people consider telling their immediate family, including their children. But what about more distant relatives, cousins and their children, people you may not know at all?
How do people react to grim news from a relative they don’t know?
Indirectly, Klitzman’s book offers an answer: They react in an enormous variety of unpredictable ways, depending to some degree on education. I found his chapter on how people process scientific information particularly fascinating. He quotes remarks like the ones below, which demonstrate how little people know about genetics and how likely they are to misunderstand what they hear.
“I figured I was going to definitely have HD (Huntington’s Disease) because I look the most like my dad…If you see pictures of him as a kid and me we looked exactly the same. When they told me it was hereditary, I thought, ‘Well, then I guess I’m going to have it.’”
“It might run in families, but I don’t think it’s genetic.”
“Ultimately, someone’s will is stronger than their genetics.”
“There’s something wrong with me. I’ve got this bad gene. I don’t know how to explain that…The first thing you think about is: I’m flawed, dirty. I’ve got this weird disease, this crazy gene.”
Unfortunately, people’s lack of background knowledge is not going to stop the sudden release of genetic information that would likely give quite a few of us a kick to the chest.
My kick came in the form of results from 23andMe, a genomics and biotechnology company, regarding my risk of Alzheimer’s.
No gene discovered so far guarantees that you’ll get Alzheimer’s, but the chances are greater if you carry the APOE-4 gene, especially if you have two copies. Information on my APOE-4 status arrived in a “lockbox” on my health results web page, a lockbox I have left closed while studying up on personal genomics.
While I have been quietly visiting the library, reading books and writing columns, 23andMe has been ramping up their marketing.
Last week they sent me an email asking me to “tell my story” explaining, “We are looking for a variety of stories that represent the 23andMe experience as part of a new marketing campaign.”
They also sent me a flashy email with a special offer: a $10 gift card from amazon for every family member or friend I refer who purchases a 23andMe kit. This reminds me of “refer a friend” promotions from coffee companies, airlines and dog food.
Do I need any more of a reminder that genetics has become a commercial enterprise? A lot of ordinary folks are going to learn about their genes and some will receive surprises. They will struggle to understand; they will struggle with what to tell their families. Many will be confused and distressed.
But companies don’t care how we feel; they care if we spend.
This is happening way too fast.