Study participants share their blood and spit in the name of biomedical research. Now, a national group of experts says these volunteers should be told what scientists learn about their health from those samples.
In a report published Tuesday, an expert committee convened by the National Academies of Sciences, Engineering, and Medicine concluded that scientists and their institutions should routinely — and carefully — consider whether to return study results to participants. The report, which was sponsored by three of the leading federal health agencies, also recommends revising a federal regulation that’s caused confusion about when it’s permissible to share research findings with a participant.
LOS ANGELES — If 7-year-old Francis Collins had his way, we might never have seen the Human Genome Project. (We'd have a pretty savvy truck driver, however).
The 68-year-old physician-geneticist has led the National Institutes of Health for nine years, with zero plans of slowing. The organization is on the verge of launching a massive endeavor — the "All of Us" effort to sequence the genomes of 1 million Americans from all walks of life.
STAT sat down for a chat with the ever-avuncular Collins at this week's Milken Institute Conference in Los Angeles — a Davos-like confab stacked with Wall Street glitterati, Hollywood change agents, industry titans, and academics.
Here's what he had to say:
If you could change one thing about science, what would it be?
I'd focus particularly on how we can recruit the best and brightest for the next generation: I fear the way most kids get exposed to science doesn't make it all that exciting. Our teaching is about memorizing things, as opposed to understanding it as a detective story. That may be depriving us of some remarkable visionaries of the future: Science is not presented in a way to make it sound like a life's calling.
Michael Gregory Kurilla, M.D., Ph.D., will direct the NCATS Division of Clinical Innovation beginning Dec. 10, 2017. Kurilla's new role will include leading the Clinical and Translational Science Awards (CTSA) Program, which supports innovative solutions that advance the efficiency, quality and impact of translational science with the ultimate goal of getting more treatments to more patients more quickly. As the largest NIH initiative, the CTSA Program supports a national network of medical research institutions that work together to tackle system-wide scientific and operational problems in clinical and translational research that no one team can overcome.
Kurilla currently serves as director of the Office of BioDefense, Research Resources and Translational Research at NIH's National Institute of Allergy and Infectious Diseases (NIAID), where he also has been involved with biodefense product development. Prior to joining NIAID in 2003, Kurilla was an associate director for infectious diseases at Wyeth. He also worked at Dupont in antimicrobials, and on molecular pathology at the University of Virginia Health Sciences Center.
Sophomore Sweta Karlekar is an undergraduate researcher majoring in computer science within the UNC College of Arts and Sciences. She is also a Chancellor's Science Scholar. Her research focuses on building an artificial intelligence program that can automatically identify early signs of Alzheimer's disease and dementia through a person's speech.
When you were a child, what was your response to this question: "What do you want to be when you grow up?"
I always wanted to be a doctor. My first chapter books were encyclopedias, and I used to walk around with science trivia books in my backpack. I thought I would hate computer science, and never gave it a fair shot until high school. Freshman year, I took my first computer science class and fell in love. I haven't looked back since.