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

Creating Life and Curing Blindness

May 21, 2010

Tags: Venter, DNA, creating life, genome, American Society of Gene and Cell Therapy, gene therapy, blindness

I’ve been at the American Society of Gene and Cell Therapy annual meeting this week, garnering tales for my book, tentatively entitled “The Forever Fix.” It is largely the story of 9-year-old Corey Haas, who was on his way to certain blindness when gene therapy performed at the Children's Hospital of Philadelphia in September 2008 restored his failing vision. Francis Collins, director of the NIH, told Congress about Corey last week.

Corey, his parents, and “Dr. Jean” Bennett, who made it all possible, were the stars of a press conference and a huge symposium. Corey got up on stage and calmly and clearly answered questions, bringing forth tears, hugs, and handshakes from usually staid scientists. But earlier in the day, hardly any reporters showed up at the press conference – because, I suspect, of Craig Venter's announcement elsewhere in Washington, DC that he and his team had essentially created life. It felt a little like Farrah Fawcett’s death being overshadowed by Michael Jackson’s.

The bloggers and bioethicists will surely go wild over Venter’s latest, which was really only a matter of time, considering his work since 1995. And I can’t help but admire the skill in running a cell on a synthetic genome. But taking it to the next step, speculating about designing life to meet our own ends, reeks of the ultimate hubris, to think that we can improve on 3.2 billion years of evolution.

I think I’ll leave the designing of life to Venter et al. I am more astonished by the delivery of a single gene into the eye of a boy who can now see.


Comments

  1. May 22, 2010 8:03 AM EDT
    Your last lines were the best
    - Larry
  2. May 23, 2010 3:02 PM EDT
    I wonder whether the drive of scientists to expand on proposed research, possibilities and hypotheses is overshadowing what it means to be human, or more specifically a primate.

    In fact, as amazing as it is to run a cell on a synthetic genome, I am more concerned about the implications of such controversial endeavours; meaning, scientists need to stop and think if they should, instead of focusing on whether or not they could. Yes, Michael Crichton, through the character of Ian Malcolm in Jurassic Park made a valid point in the endeavours and progress of science.
    - Connor "Raptor" M. Lewis
  3. May 23, 2010 4:17 PM EDT
    Yes, I agree with you completely. I often think of the mathematician from Jurassic Park -- he really had it right. I imagine the "creation" of life can do more harm than good. Some things we just shouldn't do.
    - Ricki Lewis
  4. May 26, 2010 7:07 AM EDT
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  5. May 29, 2010 4:56 AM EDT
    really nice sharing thanks
    - basur hapi

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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