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.
Glenn Nichols, surrounded by his hospice team. The author is in yellow.
April 19, 2013
10 editions of my textbook chronicle the evolution of genomics
This month we celebrate the DNA anniversaries: unveiling of DNA’s structure in 1953, and the human genome sequence in 2003.
From now until DNA Day, April 25, bloggers will be worshipping the human genome. Nature
will offer podcasts (“PastCasts”) and last week, Eric Green, director of the National Human Genome Research Institute, spoke to reporters
, summarizing the “quantitative advances since the human genome project.”
It’s also the 20th anniversary of my non-science majors textbook, Human Genetics: Concepts and Applications
. Writing the 10 editions has given me a panoramic view of the birth of genomics different from those of researchers, physicians, and journalists. Here are a few observations on the evolution of genetics to genomics, as I begin the next edition. (more…)
March 24, 2013
A genome sequenced to investigate one disease may reveal another.
You have your genome or exome (the protein-encoding part) sequenced to help diagnose a puzzling set of symptoms, and something totally unrelated, and unexpected, turns up – a so-called “incidental finding.”
Surprises, of course, aren’t new in medicine. The term “incidental finding” comes from “incidentaloma,” coined in 1995 to describe an adrenal tumor found on a scan looking for something else. I had one -- a CT scan of my appendix revealed a polycystic liver. A friend had it much worse. She volunteered to be a control in an Alzheimer’s imaging trial, and her scan revealed two brain aneurysms!
Geneticists have long expected an avalanche of incidental findings from clinical (exome or genome) sequencing. (more…)
August 20, 2012
Gregor Mendel: should he stay or should he go (in textbooks)? (National Library of Medicine)
Summer reading for most people means magazines, novels, and similar escapist fare, but for me, it’s the American Journal of Human Genetics (AJHG). Perusing the table of contents of the current issue tells me what’s dominating this post-genomic era: information beyond the obvious, like a subtext hidden within the sequences of A, (more…)
March 16, 2012
Great display at Albany Barnes + Noble
Reports are trickling in as people read my new book, The Forever Fix: Gene Therapy and the Boy Who Saved It
(St. Martin's Press). It’s been amazing to hear the emotional ups and downs that accompany the experience, taking me back to how I felt writing the book.
For months, the words poured out, seemingly out of my control. I’d interview parents and researchers, usually late in the day, and be unable to sleep, immersed in their stories. (more…)
November 19, 2011
In a hotel ballroom on the campus of the University of Pennsylvania on a midsummer Saturday in 2010, an unusual roll call was under way at the Family Conference for the
Foundation for Retinal Research
. Betsy Brint, co-head of organization, was calling out what sounded like code words – CEP290, (more…)
October 18, 2011
October 11-15, 6,200 researchers and clinicians met in Montreal for the 12th International Congress of Human Genetics. After my brain recovered from the long days of meetings, one panel discussion emerged as my favorite: what I thought was going to be a dull comparison of DNA sequencing technologies turned out to be a spirited look at (more…)
August 21, 2011
I couldn’t help but stare at the ad: the sleek double helix winding behind the coiled container of makeup looked eerily like the covers of my human genetics
textbook and upcoming book about gene therapy
, both of which have DNA as a backdrop to faces. The standard beige goo that is Revlon’s Age Defying with DNA Advantage™
cream makeup swirls symmetrically upward, resembling more a soft-serve ice cream cone before the indentations are licked away than it does the molecule of life. I decided to investigate. (more…)
May 25, 2011
Think it’s a great idea to send off a spit sample to see which future health conditions lurk in your DNA? In the U.S., the Genetic Information Nondiscrimination Act
(GINA) prevents employers from using that information (more…)
June 2, 2010
Yesterday I committed a terrible crime. I walked away from a treadmill at the Y without scrubbing the handles.
“Ricki, get back here,” admonished the attendant as I headed for the elliptical. “You forgot to wipe down!”
“But I’m not sweating, and I never get sick. I won’t pass along (more…)
May 21, 2010
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 (more…)
May 17, 2010
I met Cynthia in a van from the airport, headed to the annual meeting of familytreedna
, where I was to speak about genetic testing. A beautiful blonde who looked decades younger than her 60 years, she’d led a painful life, with type 1 diabetes since childhood, just like her father, brother, (more…)
Book Club Reader's Guide
Many challenging questions to stimulate thought and discussion.
38 discussion questions to get students thinking and talking about gene therapy, including the science, ethical issues, and the drug approval process.
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.
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.
DNA reflects who we are -- but it isn’t the whole story.
A one-hour interview, mostly about why gene therapy has been beneath the radar.
Answers for the Family (http://answers4thefamilyblog.com) on www.LATalkRadio.com
The Art of Relating BlogTalkRadio.com with Christine Kniffen
7/9/12 hourlong discussion about rare diseases + The Forever Fix
MesotheliomaHelp.net recommends The Forever Fix
Voiceamerica radio show
Kathryn Vox radio show, including "The Forever Fix"
How "The Forever Fix: Gene Therapy and the Boy Who Saved It" Wrote Itself
WOCA The Source podcast, May 21, 2012
WOCA The Source radio show podcast about The Forever Fix, May 21, 2012
The Ann Parillo Schenectady Today Show, April 17, 2012
TV segment on "The Forever Fix: Gene Therapy and the Boy Who Saved It"
Are DNA Patents Doomed? Scientific American blog 4/3/12
A brief history of patenting genes, current controversial cases, and a look ahead
"The Roundtable" WAMC Albany, NPR station, March 15, 2012
Joe Donahue interviews Ricki Lewis about "The Forever Fix: Gene Therapy and the Boy Who Saved It"
New Hope for Gene Therapy: A Young Boy's Fight Against Blindness
A short video about Corey Haas's gene therapy -- the subject of my book, "The Forever Fix: The Boy Who Saved Gene Therapy"
Publishers Weekly starred review
first advance review for The Forever Fix
Corey Plays Little League
A wonderful video of the family at the center of The Forever Fix: Gene Therapy and the Boy Who Saved It
Article on leptin and Jeffrey Friedman in RPI alumni magazine
The Forever Fix: Gene Therapy and the Boy Who Saved It
Alden March Bioethics Institute blog
Alden March Bioethics Institute blog
Advocates for published authors since 1912
Authors Guild Directory
A compendium of member websites