The Forever Fix gang: Corey Haas with book, surrounded by mom Nancy and dad Ethan Haas, Ricki Lewis on left next to Lori and Hannah Sames. At book signing 3/24/12, Barnes + Noble, Albany NY.


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Glenn Nichols, surrounded by his hospice team. The author is in yellow.

Genetic Linkage

Jim Watson at International Congress of Human Genetics

October 11, 2011

Tags: James Watson, International Congress of Human Genetics, whole genome sequencing, ApoE4, American Society of Human Genetics, Kevin Davies, schizophrenia, $1, 000 Genome, Craig Venter, Alzheimer's disease, Myriad Genetics, BRCA1

Montreal, Oct. 11, 2011 -- James Watson joined a panel of “genome pioneers” at the opening session of the 12th International Congress of Human Genetics today. He was invited, besides his fame, because he was the second person to have his genome sequenced (Craig Venter was first), but his comments revealed that perhaps his most telling qualification is that he has a son who has schizophrenia. Known for his controversial views, Dr. Watson did not disappoint.

Here are a few of Dr. Watson’s comments, highly edited but context maintained, and remarks that might offend omitted. (Kevin Davies, author of “The $1,000 Genome,” moderated.)

WHY DID YOU DO IT? “I thought, why not? I had no objection, with the exception of not wanting to know ApoE4. My grandmother had Alzheimer’s in her 90s, and the fact that I was in my 70s and didn’t have it didn’t reassure me I wouldn’t in my 90s.” (ApoE4 and the surrounding DNA were deleted from Watson’s published genome sequence. People with two copies of a variant of this gene have a 15-fold increased risk of Alzheimer’s and people with one copy have a 3-fold increased risk.)

WHAT DID YOU LEARN THAT WAS USEFUL? “Finding that I am a slow metabolizer of antipsychotics and beta blockers. I have a slightly irregular heartbeat and the doctor put me on beta blockers. Two put me to sleep. Now I take them once a week, so knowing I’m a slow metabolizer was a real medical benefit. It also may have explained a mystery concerning my son. He almost died of neuroleptic malignant syndrome from an antipsychotic. I now know that if I go psychotic, I will tell people I can’t take those drugs.”

WAS ANY INFORMATION NOT HELPFUL? “They told me I had something that should have killed me, a mutation in a DNA repair gene. And so I decided not to think about it. I didn’t go and look it up. Then they told me I was one base pair off the bad one. They told me I was a carrier for BRCA1 and so I thought I would have to phone my nieces because their mother had breast cancer. But before that I asked Mary-Claire King (who discovered the gene) and she said no, I had a harmless variant. So I’m glad I didn’t call my nieces because then they would have paid that disgraceful sum of money to Myriad Genetics.”

WHO SHOULD HAVE THEIR GENOMES SEQUENCED? “I’d like to see children who have mental illness sequenced with their parents. The moment you have a son who is not normal, you wonder that you are the cause, or you could have done something differently. Finding a mutation would make parents see that it was just genetic injustice, not anything they did. Knowing that won’t make their child healthy, but they won’t have the double whammy of thinking they did something wrong. Genetics will help us to understand why people don’t fit in.”

ARE YOU WORRIED ABOUT THE FLOOD OF DATA? “I’m more worried that we’ll get the flood of information and we won’t use it because of excessive concern about privacy. Right now I’d be pragmatic, be as free as possible with sequencing genomes, and then if disaster is the result, we’ll try to correct it. I’d hate for anyone to say ‘you can’t tell your child that he has a DNA change.’ I think parents, within limits, should have control over what their children know, and trying to regulate that would be just awful. I’m very happy the $1000 genome exists. Every time someone goes into a children’s hospital with a serious disease, it would be immoral NOT to sequence him.”

Comments

  1. December 15, 2011 11:00 PM EST
    Dear Ricki, I love your writing! I can see the picture. I attended the Annual Conference of the ASHG once and was hypnotized by the discussion about personal medicine! That was my talk title that I presented yesterday.
    - Marina Markova

Selected Works

instruction
Project to engage students in helping families with rare genetic diseases
Book Club Reader's Guide
Many challenging questions to stimulate thought and discussion.
Instructor's Guide
38 discussion questions to get students thinking and talking about gene therapy, including the science, ethical issues, and the drug approval process.
Narrative science
The Forever Fix is the uplifting true story of 8-year-old Corey Haas, who was cured of hereditary blindness just 4 days after gene therapy.
College Textbooks
A spectacularly-illustrated, clearly written human anatomy and physiology textbook, used in pre-health profession programs throughout the U.S.
A highly engaging, clearly written, beautifully illustrated introduction to the science of human genetics for the non-scientist. Now in its 10th edition.
Nonfiction
DNA reflects who we are -- but it isn’t the whole story.

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