List date(s) this work was published or aired.
20-Jul-11
Provide a brief synopsis of the story or stories, including any significant findings.
Alzheimer’s afflicts nearly 36 million people worldwide, most of whom experience its mind-robbing symptoms late in life and slowly succumb to death. But what if you could find out in your 40s, or earlier, that you were prone to this devastating disease that has no cure? Would you live your life differently? In a deeply-reported story rooted in the cutting edge of diagnostic science, Reuters posed this wrenching question to readers and opened a new chapter in the debate about the disease. Julie Steenhuysen’s report in July was the focal point of the Alzheimer Association International’s annual meeting in Paris, and was cited as such by the world’s most influential patient advocacy group for the disease. “With Alzheimer’s in the genes, when do you test?” studied the devastating consequences for one American family with a rare form of inherited Alzheimer’s that can show up as early as age 40. Some of its members have agreed to become human “guinea pigs,” subjecting themselves to clinical tests to detect changes in the brain that might appear long before symptoms appear. That data could eventually help develop early diagnostic tests for a much wider population. The story presented fresh findings from Harvard School of Public Health, showing a majority of people surveyed would want to know early, even if there is no treatment. It laid out the current state of Alzheimer’s research, where companies are closer to providing diagnostic tests than they are to developing a treatment. And it laid out some of the stark choices faced by people who live with the near-certainty that they will develop Alzheimer’s, including the question of whether to conceive their own children when a cruel genetic fate may await them. Original reporting that painted the whole picture of disease, spanning the personal story, the science and the implications for health policy, made this piece exceptional.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
This story included results of a new Harvard public health survey on early testing for Alzheimer’s disease.
Explain types of human sources used.
Human sources included extensive interviews with scientific experts, company researchers and executives, caregivers and the generous support and aid of Gary Reiswig and his family, whose candor and bravery made this story come to life.
Results:
In addition to prominent play on the Reuters.com website, the article was widely cited in national media, including a full spread by the Chicago Tribune. Nearly 5,000 readers of the story on MSNBC participated in a poll on the subject, with 80 percent saying they too would prefer to know early so they could plan for the future. Media outlets from the Associated Press and CNN to the New York Times produced their own version of the same idea days or weeks later.
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.
This story has not been corrected nor has its content been challenged. The story was repeated to include additional links on the website, but no changes were made to the copy.
Advice to other journalists planning a similar story or project.
I have spent the past few years focusing on Alzheimer’s disease, attending scientific meetings and spending time getting to know the key researchers. The idea for this story came from a conversation with Dr. Randall Bateman of Washington University School of Medicine in St. Louis, who is working with patients who have Dominantly Inherited Alzheimer’s Disease. Dr. Bateman reached out to patients, who volunteered to help me with this story. I would urge other reporters to dig deeply into a subject. That is where the best stories live.