- http://www.bloomberg.com/video/84364498-genetic-counselor-charts-reporter-s-family-history.html
- http://www.bloomberg.com/video/86406762-bloomberg-news-reporter-learns-genome-results.html
- http://www.bloomberg.com/video/bloomberg-reporter-gets-second-opinion-on-dna-test-a~bxIq0BTPyoD_iEV2EcwA.html
- http://www.bloomberg.com/video/85150332-complete-genomics-ceo-on-dna-sequencing-capacity.html
Provide names of other journalists involved.
Editors: Jonathan Kaufman, Lisa Wolfson Videographers: Jonathan Elmer, Marc Perrier
List date(s) this work was published or aired.
“Mapping My Genome Starts a Search…” 1/17/12; “Harvard Mapping My DNA Turns Scary…” (2/15/12); “My DNA Revelation Spurs Alzheimer’s Anxiety…” (11/6/12)
Provide a brief synopsis of the story or stories, including any significant findings.
It was a journey that began with a simple question: How much do you want know? When reporter John Lauerman, a 53-year-old father of two, decided to get his DNA sequenced–an increasingly common procedure in clinics around the world–he hoped to gain insight into how rapid genome sequencing was revolutionizing research and medicine. Instead, he plunged into a world of uncertainty. His sequencing revealed a mutation that’s been linked to rare “cancer-like” blood disorders that range in severity from mild to potentially lethal. In the final installment, Lauerman reveals that he has one of the more benign conditions related to the mutation, and that he is getting preventive treatment that he wouldn’t have received, had he never undergone sequencing.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
Lauerman put his own medical records and imaging the public domain. He produced videos using photos of family members that illustrated the medical questions that the sequencing project would explore.
Explain types of human sources used.
Lauerman consulted with patients, research subjects, patient advocacy groups, doctors, genetic counselors, and researchers. Scientists from the National Human Genome Research Institute, Harvard University, Cold Spring Harbor Laboratory in New York, the University of North Carolina, the Medical College of Wisconsin, and many other top universities were interviewed and consulted. We also talked to the makers of sequencing technology — Illumina Inc., Complete Genomics Inc., and Life Technologies Corp., and companies that provide tests, such as Ambry Genetics. We interviewed insurers, including Cigna and UnitedHealth Group.
Results:
Lauerman has frequently been called upon to speak on the privacy, ethics and medical issues that arise when patients’ genomes are sequenced. He has appeared on National Public Radio’s Science Friday and the Huffington Post’s Huffpost Live. He’s also been invited to observe meetings of the American Board of Medical Genetics, which certifies genetics training programs, and is under consideration as a potential board member. His pieces have run in publications around the world, and have been widely cited on social media, including Facebook and Twitter. Researchers who worked on his case are planning to write it as a study in the utility of genome sequencing. Hundreds of readers have responded to the story, many of them to relate their own stories about the discovery of mutations in their DNA.
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 one has challenged the accuracy of our stories.
Advice to other journalists planning a similar story or project.
Many people have told me they would never have their genomes sequenced because they’re afraid of what they might find. Others have said that they’d like to find out whether there’s information about their health future in their genes. I think the danger of doing a story like this comes from hoping to discover medically important information. It’s very important to have the time and available expertise to think through the results of such a comprehensive test, the results of which few people really understand. This is the kind of story that you either do out of curiosity, or stay away from entirely.