After graduating from Princeton University in 1988 with a degree in chemical engineering, Jocelyn Kaiser worked for General Electric. But she soon found that she enjoyed writing and traveling over chemical engineering and enrolled in a journalism masters program at Indiana University. At first, she planned on being a foreign correspondent in South America, but she says, "In the end science writing turned out to be a comfortable fit." Kaiser joined Science as an intern in 1994 and now covers biomedical research and policy for the magazine. I recently caught up with her to talk about her experience reporting "Gene Therapy in a New Light," her feature story in Smithsonian's January issue.
What drew you to this story about gene therapy? Can you describe its genesis a bit?
I've been following gene therapy for Science for the past few years. During that time there have been very few clinical successes—that is, until now almost nobody has shown that gene therapy works in people. So I've been watching for clinical studies that worked. I spotted Jean Bennett and Al Maguire's blindness study in the spring when I was scanning the program for an upcoming gene therapy meeting. It turned out that they and a British group were about to publish studies in a major medical journal showing that gene therapy improved the vision of several young adults born with a rare blindness disorder. In the course of interviewing Bennett and Maguire about their paper, I learned a bit about how long and hard they had been working towards this goal. I realized they would make a good profile.
What was your favorite moment during your reporting?
I'm not sure a particular moment stands out. But one thing I enjoyed was meeting Alisha Bacoccini, one of the volunteers in this study. I don't think I've ever interviewed a patient for a story in Science. Seeing how difficult it is for Alisha to walk down a hallway and hearing about her life as a nearly blind person made the research so much more real and compelling.
What surprised you or what did you find interesting about gene therapy that you didn't know going into this assignment?
I don't think I fully appreciated the simplicity of gene therapy until I reported this story. It was pretty amazing to see a very normal-looking dog bounding down the sidewalk that was nearly blind a year ago, and can now see thanks to a single injection in each eye. Part of the appeal of gene therapy is that it is potentially a permanent cure. Again, seeing the results instead of just reading a paper about them made that promise so much more real.
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Comments (9)
My 17 year old son has been diagnosed with Cone Dystrophy for the past 13 years. My son knows that he is color blind and that his vision can not be fully corrected to 20/20, but over the years, he has been a straight A student and has been very involved with sports. He was a Little League, JH and Freshman pitcher for baseball, and after his freshman year decided himself that it just wasn't safe for him to be on the mound with his condition.
He is a starter in basketball as well. He has had accidents with stitches and has recently gotten his driver's license with some restrictions. He has most recently applied to the Air Force, but has not had his file reviewed fully by the Air Force doctors. I pray everyday for an injection or any advancement in the gene therapy field for him. I know that we are blessed and whatever shortcomings this gene defect bring his way, we will deal with as a family.
I appreciate all the parents out there that work with their children and suffer and support them every day. I do worry that the current economical state will affect the research and development aspect of science that may help our loved ones. All we can do is pray and network our resources!
Posted by Michelle Schaal on May 21,2011 | 05:38 PM
My sister thinks her eyesight is in danger. Six months ago she was diagnosed with Floaters in her eyes.
According to her doctor two-thirds of her eye is filled with vitreous, a jelly-like substance which begins to contract with age and she just turned 51. She sees "Occasional spots, threads or webs 'floating' across her field of vision and her doctor told her that shadows on the retinal surface," is a sudden onset of floaters, particularly dark splotches, may signal the start of a retinal tear. Also,indicates the vitreous is tugging on the retina and may cause it to come loose from its normal position.
What is the soluition for a retinal tears to prevent it from becoming detached?
Posted by Sue Selassie on October 26,2009 | 10:12 PM
My husband has Cone Dystrophy, also sometimes called Rod Cone Dystrophy. The idea of gene therapy as a future cure is very exciting. After some research though, and discussions with specialist in retinal disorders, it sounds like it will take more than simply injecting copies of a working gene into the retina. I do believe that eventually this will be the direction required for a lasting cure; but it will not be a solution right away.
Posted by Dale Graham on February 22,2009 | 11:29 AM
My son has juvenile macular degeneration and an upcoming appointment with this group of wonderful doctors and clinicians. Thank you so much for helping to spread this information to others and also providing hope to those of us affected with hereditary vision diseases.
Posted by Elizabeth Peters on January 31,2009 | 04:22 PM
I really enjoyed this article in Smithsonian Magazine. My husband brought it to my attention. He read it last night and was so excited that he couldn't sleep. Our 3 yr old son has been diagnosed with Rod Cone dystrophy. He is already considered legally blind. We do not know much about this disorder and are always looking for information. When we read this article we thought it might mean hope for this diagnosis. I have researched Rod Cone on the internet and the information is not very current. I hope someday something like this will work for my son. Thanks for writing this very informative article. Sincerely, Carmella and Tom Pike
Posted by Carmella Pike on January 5,2009 | 05:16 PM
We personally know Corey and I can tell you from first hand experience that the treatments and surgery he has gone through have been absolutely amazing. Corey's mom Nancy and I have been friends for years and to know that their son's vision is improving every day has been a total blessing to us all. Thank you to those who have spent your time in research and development in this field. Your efforts have made a big difference in the lives of Corey, his parents and those who love him. It's like a rebirth for Corey!!!
Posted by L. Melito on January 4,2009 | 05:02 PM
my 6mth old son has batten desease infantil ncl1 wich is a fatal out come that has caused his blindness can this research help him gain some sight ...adrienne
Posted by adrienne on January 3,2009 | 02:38 PM
This is wonderful - more than expected! As I read the article, I wondered if there has been research like this on another inherited disease - Fuchs Dystrophy, sometimes referred to as Fuchs Endothelial Dystrophy? Where can information on Fuchs Dystrophy be found, etc.?
Posted by W. M. Fincher on December 29,2008 | 12:25 AM
What a fascinating article. For an in-depth look at the many years of research and the many scientists that helped make LCA gene therapy a reality - the National Eye Institute (NEI) website has a good timeline at http://www.nei.nih.gov/lca/
Posted by Lee Tout on December 23,2008 | 01:55 PM