Genetic Test Firm to Put Customers’ Data in Public Domain

“In an unusual move, a leading genetic testing company is putting genetic information from the people it has tested into the public domain, a move the company says could make a large trove of data available to researchers looking for genes linked to various diseases.

“The company, Ambry Genetics, is expected to announce on Tuesday that it will put information from 10,000 of its customers into a publicly available database called AmbryShare.

“ ‘We’re going to discover a lot of new diagnostic targets and a lot of new drug targets,’ Aaron Elliott, interim chief scientific officer at Ambry, which is based in Southern California, said in an interview. ‘With our volume, we can pull out a significant number of genes just by the sheer number we are looking at.’ “


Super Patient: Steven Keating Fights Brain Cancer with Data


In 2007, Steven Keating got his brain scanned for fun. “I volunteered for a study,” says Steven, who was then a student at Queen’s University in Canada. “I wanted to help science, and I was curious about seeing my brain.”

He saw more than anticipated—the magnetic resonance imaging (MRI) revealed a dime-sized abnormality in his left frontal lobe. But the researchers couldn’t tell what it was, and he had no adverse symptoms. “They said ‘don’t worry, keep an eye on it,'” Steven, who is now a Mechanical Engineering graduate student at the Massachusetts Institute of Technology (MIT) Media Lab, recalls. A follow-up scan in 2010 wasn’t worrisome either. Continue reading…


Preparing for Responsible Sharing of Clinical Trial Data

“Data from clinical trials, including participant-level data, are being shared by sponsors and investigators more widely than ever before. Some sponsors have voluntarily offered data to researchers, some journals now require authors to agree to share the data underlying the studies they publish, the Office of Science and Technology Policy has directed federal agencies to expand public access to data from federally funded projects, and the European Medicines Agency (EMA) and U.S. Food and Drug Administration (FDA) have proposed the expansion of access to data submitted in regulatory applications. Sharing participant-level data may bring exciting benefits for scientific research and public health but may also have unintended consequences. Thus, expanded data sharing must be pursued thoughtfully. We provide a suggested framework for broad sharing of participant-level data from clinical trials and related technical documents. After reviewing current data-sharing initiatives, potential benefits and risks, and legal and regulatory implications, we propose potential governing principles and key features for a system of expanded access to participant-level data and evaluate several governance structures.”


Preparing for Responsible Sharing of Clinical Trial Data

“Data from clinical trials, including participant-level data, are being shared by sponsors and investigators more widely than ever before. Some sponsors have voluntarily offered data to researchers, some journals now require authors to agree to share the data underlying the studies they publish, the Office of Science and Technology Policy has directed federal agencies to expand public access to data from federally funded projects, and the European Medicines Agency (EMA) and U.S. Food and Drug Administration (FDA) have proposed the expansion of access to data submitted in regulatory applications. Sharing participant-level data may bring exciting benefits for scientific research and public health but may also have unintended consequences. Thus, expanded data sharing must be pursued thoughtfully. We provide a suggested framework for broad sharing of participant-level data from clinical trials and related technical documents. After reviewing current data-sharing initiatives, potential benefits and risks, and legal and regulatory implications, we propose potential governing principles and key features for a system of expanded access to participant-level data and evaluate several governance structures.”


Preparing for Responsible Sharing of Clinical Trial Data

“Data from clinical trials, including participant-level data, are being shared by sponsors and investigators more widely than ever before. Some sponsors have voluntarily offered data to researchers, some journals now require authors to agree to share the data underlying the studies they publish, the Office of Science and Technology Policy has directed federal agencies to expand public access to data from federally funded projects, and the European Medicines Agency (EMA) and U.S. Food and Drug Administration (FDA) have proposed the expansion of access to data submitted in regulatory applications. Sharing participant-level data may bring exciting benefits for scientific research and public health but may also have unintended consequences. Thus, expanded data sharing must be pursued thoughtfully. We provide a suggested framework for broad sharing of participant-level data from clinical trials and related technical documents. After reviewing current data-sharing initiatives, potential benefits and risks, and legal and regulatory implications, we propose potential governing principles and key features for a system of expanded access to participant-level data and evaluate several governance structures.”


The Scientist Discusses Cancer Commons in Self-Tracking Article

Reporter Kerry Grens mentions Cancer Commons in a recent article in The Scientist. The piece explores the trend of self-tracking—monitoring one’s health over time using a variety of cutting-edge and traditional procedures, including genotyping, gut microbiome sequencing, hormone level measurement, heart rate variability tracking, weight measurement, and more. From the article:

“To further research, organizations have tapped into people’s interest in sharing personal data. Cancer Commons, a large network of cancer researchers, appeals to patients and their physicians to submit individual data on treatment, cancer genotype, and outcomes.”

Read the full article here.


Collaborative Effort Aims to Find Strategies to Preempt Resistance to Prostate Cancer Therapies


The ‘Targeting Adaptive Pathways in Metastatic Treatment-Resistant Prostate Cancer’ 3-year project aims to understand how prostate tumors become resistant to two newer drugs for prostate cancer that target the androgen receptor pathway—enzalutamide and abiraterone acetate. Continue reading…