- http://usatoday30.usatoday.com/news/health/story/2012-04-09/genetic-testing-huntingtons-disease/54475708/1
- http://usatoday30.usatoday.com/news/health/story/2012-06-02/huntingtons-genetic-testing-followup/55345096/1
List date(s) this work was published or aired.
April 23, 2012, June 5, 2012 (a
Provide a brief synopsis of the story or stories, including any significant findings.
I approached the complex issues a family faces when one of its members decides to get genetic testing. In this family’s case, a daughter decides to test for Huntington’s disease when she turns 18. I weave into the story a look at how genetic testing is becoming more popular (and cheaper) for millions of people who want to know their risk for developing all kinds of diseases.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
Not applicable
Explain types of human sources used.
I made two trips to Chapel Hill, N.C. to interview Kristen Powers, her family members, friends and doctors. The first trip I interviewed her, her brother, who is too young to be tested and her parents. On the second trip, Kristen asked me to be with her in the hospital room at UNC when she got her results. It was one of the most intense moments of my life.
Results:
The story generated many reader comments, mucho back and forth about the pros, cons of genetic testing.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
No challenges
Advice to other journalists planning a similar story or project.
We did a two-parter mostly because that’s USAT style and lack of print commitment. I would recommend atleast a three-parter, with an overview setting up what we know about testing now, how is changing medicine and whether or not this kind of research will protect an individual’s privacy.