Trusting Tech Companies with Our DNA Data A ‘Tough Sell’

In a recent article posted on Bloomberg Law, John Wilbanks, chief commons officer at Sage Bionetworks, commented:

“People don’t trust tech right now…the idea that we’re suddenly going to trust them with all of our DNA, that’s going got be a tough sell.”

Wilbanks was speaking on the panel Using Patient Data in Research: Balancing Benefits and Risks during the Milken Institute’s Future of Health Summit 2019. The panel focused on the following topics:

We are capturing, tracking, and creating more data than ever about our lifestyle and health. More and more companies hold our data, which we sign away by indicating that we’ve read extensive privacy policies, when few of us actually have. And there are major gaps, loopholes, and complexities in the regulations that protect our data. Yet, when put to good use, these masses of data might help us manage our health, help providers understand the patient experience, and help researchers glean new insights about disease and biology. What risks exist when companies carry so much consumer data? How can good practice and regulations mitigate these risks? Our panel of experts will discuss these issues and lead a conversation about how we can shift towards an environment where health data is used to empower patients, while also being used to glean new insights for research and move the field forward.

Read the Bloomberg article…


Progress is being made in the use of personalized approaches to create both in vitro and in vivo tumour models

Cancer: A precision approach to tumour treatment

Nature Magazine

by Rodrigo Dienstmann Josep Tabernero

Precision cancer therapy pairs the latest insights into tumour biology with cutting-edge technologies to identify gene alterations that can be directly matched to anti-cancer agents. Writing in Cancer Discovery, Pauli et al.1 outline how they have opened another chapter of this work by using DNA sequencing of tumour samples along with testing of patient-derived cellular models. This enables the use of high-throughput drug screening to assess treatment-response patterns and thereby expand the options for tailoring cancer therapy to the individual.

Pauli and colleagues initiated a clinical-research programme that sequenced the DNA of protein-coding regions of the genome in samples of individual patient’s tumours, as well as their healthy tissue for comparison, to identify tumour-specific alterations that might be drug targets. However, the authors soon realized that DNA-sequence information alone was insufficient to guide therapeutic decision-making in most cases. Of the 501 people with cancer who were tested, the majority of whom had advanced-stage disease, only around 10% had gene alterations that could be directly matched to targeted agents approved by the US Food and Drug Administration (FDA). This percentage included those whose tumours might be targeted through ‘off-label’ drug use, in which a treatment approved to target an alteration in one tumour type could be repurposed to treat other tumour types. Read the full story.