Building the Trust Infrastructure for Synthetic Bi...

Jurassic World. Orphan Black. Splice. Helix. Synthetic biology is the inspiration behind these and many other popular science fiction movies and television series, and it seems that the public cannot get enough of them. While these stories provide entertainment with their extreme scenarios, more importantly, they are also raising critical issues around the moral and ethical implications of modifying and/or creating life. And as we get closer to dropping the “fiction” from “science fiction”, everyone needs to be a part of this conversation. Genome engineering technologies have advanced to the point that we are creating synthetic...

‘Power to the People’ Gets Real in Research

In a recent blog at the NY Times, Steve Lohr observes that “Traditionally, patient information has been tapped for research in large pooled databases” but that is changing due to “Institutional practice, individual attitudes and new technology…” leading to new opportunities in research. He quotes Dr. Stephen Friend of Sage Bionetworks: “The patient, doctor and researcher – each is a different kind of expert.” Mr. Lohr and Dr. Friend are right on target. We are seeing exactly these trends play out in real-time in www.iConquerMS.org – an initiative funded by the Patient-Centered Outcomes Research Institute  – designed not...

Networks, Cities, and Data: The Future of Better H...

If you’re not convinced the future of healthcare has arrived, just wait a few days:  it should be coming to a mobile device or a big box store near you soon: Quantified-self software by which you can monitor every bodily function and have the data integrated into your medical record. Low-cost Genomic profiling to identify your disease risks. Biomarker-directed personalized drugs that are optimally efficacious for your particular molecular sub-group of disease. Self-help health maintenance tools to integrate all that bodily function monitoring and your genomics profile with the right drugs and food/exercise choices to slow or prevent...

Patient-Centered Cancer Research and Care

Leading up to the American Society for Clinical Oncology’s annual meeting this week, the Pharmaceutical Research and Manufacturers of America (PhRMA) [client] posed the following question as part of its “Conversations” series – “How do we promote patient-centered cancer research and care in an era of increasing pressure to control healthcare costs?” PhRMA’s “Conversations” platform fosters open and ongoing dialogue on health care policy solutions. The forum blends posts from formal contributors with comments from experts and thought leaders on a broad range of high-level policy topics to help gauge what’s working,...

Sweet Enough

By now, you’ve probably heard of a new movie in theaters called “Fed Up”. It’s a documentary-style expose of the “SAD” – the Standard American Diet – and covers a wide range of issues behind why America currently leads the world in both adult and child obesity rates. Included in the long list of culprits behind our ballooning waistlines is SUGAR. A master of disguise, sugar often appears in our food and drink labelled as one of 40+ pseudonyms—including sucrose, maltose, dextrose,  fructose,  glucose, galactose, lactose, high fructose corn syrup, and glucose solids—which makes its detection confusing to...

The (New) Ethics of Medical Privacy

I recently had the opportunity to attend a screening of Here.Us.Now., a documentary funded by the Ewing Marion Kauffman Foundation. It should be required viewing for anyone who touches the health care system, which includes pretty much everyone. The film tells the story of Chris and Hugh Hempel’s medical odyssey in the wake of their twin daughters’ diagnosis with a rare, incurable disease called Niemann-Pick Type C. I can’t get this film out of my head.   Why? Because it not only tells the Hempels’ story rationally and beautifully, it uses their narrative to absolutely nail the bigger issues facing any family desperately...