- http://www.bloomberg.com/video/breast-cancer-survivor-warns-of-misread-dna-tests-aRDyJVLhTfeFqAvtXxiUog.html
- http://www.bloomberg.com/video/hampel-discusses-failure-to-test-for-cancer-genes-LH3QzG3RSiOPrZrQM3y_2g.html
Provide names of other journalists involved.
Jonathan Kaufman, Reg Gale, Lisa Wolfson , Chris Staiti
List date(s) this work was published or aired.
“DNA Tests Go Awry…” (9/10/12); “Life-Saving DNA Test Languishes…” (10/24/12); “Myriad Genetics Stymies Cancer Answers…” (12/28/12)
Provide a brief synopsis of the story or stories, including any significant findings.
DNA sequencing has never been as fast, easy and cheap as it is today. While the technology has opened up a world of understanding for doctors and patients, Langreth and Lauerman revealed a medical system unprepared for the avalanche of DNA information–and proved that patients are being harmed as a result. Langreth spent months investigating an oncologist who gave a patient incorrect genetic test results, leading to a second tumor that nearly killed her. Langreth showed how patents on genes held by testing giant Myriad Genetics prevent doctors from offering more comprehensive testing for inherited breast and ovarian cancer that could save women’s lives. The reporters showed how perverse financial incentives keep long-established tests for mutations that raise the risk of inherited colon cancer on the shelf, even though they’re recommended by a government-sponsored panel.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
Robert Langreth and John Lauerman tracked down obscure scientific publications hinting at quality control problems in the genetic testing process. They contacted the authors and used them to find patients who had been hurt by genetic testing mistakes. Langreth searched legal filings for cases of patients harmed by misinterpreted DNA tests. For the story on errors in breast cancer tests, Langreth rummaged through boxes of old medical records to nail down how a woman got a false negative genetic test result. He obtained internal records from Myriad Genetics that showed how the company performed an additional test that the ordering doctor did not expect, confusing the doctor.
Explain types of human sources used.
Langreth and Lauerman consulted with patients, doctors, genetic counselors, and researchers. They made use of advocacy groups to identify patients who underwent gene testing. Langreth made multiple trips to California to interview breast cancer survivor Debbie McCarron and her extended family for the fumbled cancer test story. Langreth and Lauerman conducted extensive interviews with the pioneers of DNA sequencing and testing, including Mary-Claire King and Henry Lynch. Scientists from the National Human Genome Research Institute, Harvard University, the University of North Carolina, and other top universities were interviewed, as well as top FDA officials and executives from testing companies.
Results:
Langreth’s story on misinterpreted DNA tests raised concerns at the FDA about doctors’ level of genetic understanding, and is frequently cited at genetic conferences, including the American Society of Human Genetics, as a demonstration that more medical training in genetic testing is needed. Lauerman has been invited to observe the deliberations of the American Board of Medical Genetics and Genomics, an education group. The article on Myriad Genetics generated responses from researchers who disputed Myriad’s claim that it has never made an error in reporting breast cancer test results.
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.
For these stories, the reporters spent months tracking down patients who had been harmed by flaws in the genetic testing process, and weren’t constrained from talking by confidentiality agreements. This brought alive what could have been an abstract discussion about flaws in genetic testing. Others doing similar stories should be prepared to make the effort to find patients who have been harmed–and are willing to go on the record.