Dawn Barry is an esteemed genomics thought leader and veteran of the San Diego biotech industry. She spent twelve years at Illumina, Inc., including serving as the vice president of Applied Genomics and leading pioneering teams in preemptive health screening, nutrition security, and transplant diagnostics. Dawn was a co-founder of the Illumina Understand Your Genome(R) symposium, which is now owned by Genome Medical. From there, Dawn embarked on a new journey to reshape health research and engage individuals to advance science via their health data. Read her full bio.

Interview with Dawn Barry of LunaDNA

Q: We have a long way to go with clinical trials participation. The enrollment number today is at 2-3% and that number is falling. What type and level of shift in culture, laws, collection methods, or other areas is going to be needed to accomplish widespread data sharing?

A: The old way of engaging with clinical trial participants needs to evolve into a model that is more collaborative and participatory. Research “subjects” need to morph into research partners that are genuinely interested in the study being conducted, both in the here-and-now and in the future state, through longitudinal engagement.

Q: How do you envision the future of data sharing and what do you predict the landscape will look like in 5 years, 10 years, etc?

A: I envision a future where any community can organize around a research question; drive the aggregation of the necessary data; and support the broadest vision of who can be a researcher. This is embodied in the open science movement; however, more progress is necessary in the near term.

I look forward the transformation of future data collection and I can envision a day that’s connected through wearables, sensors and internet of things where we can simultaneously live life while donating our “digital bodies” to science. The opportunity and imperative today, however, is to operationalize people-first principles in data control, transparency, privacy and value sharing so that we properly engage individuals as partners in research. The scientific community’s insatiable hunger for larger and richer data sets will be met by the scalable and contextualized life data that’s representative of our diverse communities.

Q: Is there anything else you would like to share with the PMWC audience?

A: Please see below for additional questions and answers for your consideration.

Q: Existing US law generally gives individuals the right to access their healthcare data and requires covered entities to share it with others. Besides this new access, what other forces are at play to recognize people as research partners?

A: While patients have greater access to their medical data now more than ever before, the medical data provided through patient portals falls short of what researchers require to advance medical knowledge. I believe patient portals will evolve from supporting data access to forming a conduit for enhanced, real-time engagement, convenience, and consolidation of all of your health data in a central location. Moreover, there is increasing sensitivity that patient data is a valuable asset that’s being bought and sold regularly, often without individuals’ knowledge or consent.

There is demand for this data, as researchers are increasingly calling for real-world, longitudinal data to make transformational discoveries. The LunaDNA platform was founded to operate at the intersection of individual data access and empowerment and research acceleration to cure disease. We are bullish that these forces of change and opportunity will push the entire health data landscape to modernized systems and empower people to share their health data for the greater good of health research.

Q: Why is it important to reach out to and engage underrepresented populations and to investigate the feasibility and acceptability of public health approach?

A: Underrepresented communities in research weakens the scientific generalizability and clinical applicability of discoveries and interventions. Explanations of failure to achieve diversity in health research are well documented and range from past injustices to simply failing to offer greater value than risk or effort. Engagement and trust are not achieved by hosting a single meeting and giving away free testing kits, and people-centricity and individual control are much more than de-identification.

Achieving balanced representation and diversity can provide a richer perspective on the issues, which in turn suggest solutions or approaches that would otherwise lie unexplored. Increased diversity also promotes an ability to observe relationships within the data that remains hidden in more homogeneous data sets. Lastly, diversity also leads to an increased level of trust due to a broader representation of peoples’ interests. Without trust, we hurt our ability to improve health for all.

Q: Why is building trust amongst your members imperative in the interactive process and what type of requirements are needed to build a trusting community?

A: LunaDNA was formed to reshape research from a transactional snapshots of study subjects to relational, continuous engagements. This is best achieved by individuals recognizing that they are the best curators of their personal health information. Trust is vital in any relationship and we see data sharing as a dynamic relationship that is constantly re-assessed based on kept promises. As an ethical business, our model puts people first, operationalizing core beliefs that transparency creates trust, increased control enhances trust, and reciprocity maintains trust. Opt-out, consent, and unfavorable terms tucked deep in lengthy legal documents are not trust-earning instruments, but have been successful tactics to acquire data. In an increasingly connected, digital and data-mindful world, we have the opportunity to both honor individual’s needs in a data-sharing relationship and create a remarkable platform for research.

Q: While re-identification risks cannot be eliminated, how is LunaDNA’s platform reducing the likelihood of these risks?

A: Since no system is 100 percent penetration-proof, it’s important that people are fully aware of the risks in data generation and confident in their data sharing decisions. To eliminate risk, LunaDNA’s platform de-identifies, encrypts and segments the data to remove context for each data element. Our architecture is designed to split out data, such as authentication credentials, transactional records, genomic data and phenotypic content.The intent is to ensure that if any data is compromised it cannot easily be linked back to other records. This segmentation of information ensures our threat avoidance measures are exponentially more effective, as multiple, independent attacks would need to occur to gather enough data what would compromise the privacy of an individual.

Interview with Ken Bloom of Ambry Genetics

Q: Tell us more about your organization/company. What patient population are you serving and which services are you specializing in?

A: Ambry Genetics is a recognized leader in high quality complex genetic testing. We seek to find the genomic cause or contributors to rare diseases, abnormal phenotypes and hereditary disorders.

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Interview with Lee Pierce of Sirius Computer Solutions

Q: What is the state of big data and analytics in healthcare, and how to best use the reams of data available?

A: More than ever, Healthcare organizations are achieving measurable value through use of their data and analytics assets. There is more raw material available than ever to create value. This raw material is the data flowing from internal systems and applications and also from devices and systems external to healthcare organizations.

Read More

Interview with Anita Nelsen of PAREXEL

Q: There are various new, emerging technologies that bring us closer towards a cure for life-threatening disorders such as cancer, HIV, or Huntington’s disease. Prominent examples include the popular gene editing tool CRISPR or new and improved cell and gene therapies. By when can we expect these new technologies being part of routine clinical care?

A: Today’s emerging technologies are making the promise of individualized treatment a reality.

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Interview with Ilan Kirsch of Adaptive Biotechnologies

Q: The Nobel Prize in Medicine was awarded recently to James Allison and Tasuku Honjo for their work on unleashing the body’s immune system to attack cancer, a breakthrough that has led to an entirely new class of drugs and brought lasting remissions to many patients who had run out of options. The Nobel committee hailed their accomplishments as establishing “an entirely new principle for cancer therapy.” What is your first-hand experience the impact that those new drugs had on patients?

A: For decades cancer was viewed as solely a cell-autonomous condition.

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BMS buys Celgene | Lilly buys Loxo Oncology – Does this Signal a Return to Strong Deal-Making Activities in 2019?

Bristol-Myers Squibb’s blockbuster $74B deal to buy Celgene creates an oncology powerhouse amid industrywide excitement about the rapidly evolving science and explosive growth of the sector. The agreement could signal a return to deal-making for the pharmaceutical industry in the $133B global oncology therapeutics market.

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Interview with Gini Deshpande of NuMedii

Q: What need is NuMedii addressing?

A: NuMedii, has been pioneering the use of Big Data, artificial intelligence (AI) and systems biology since 2010 to accelerate the discovery of precision therapies to address high unmet medical needs. Artificial Intelligence approaches are a natural fit to harness Big Data as they provide a framework to ‘train’ computers to recognize patterns and sift through vast amounts of new and existing genomic

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Interview with Minnie Sarwal of UCSF

Q: Genomic medicine is entering more hospitals and bringing with it non-invasive technology that can be used to better target and treat diseases. What are some key milestones that contributed to this trend?

A: Completion of complete sequence data from the human genome project, and the advances in proteomic, microRNA and epigenetic assays added a layer of pathway biology to the understanding of human diseases.

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Interview with Shidong Jia of Predicine

Q: Once sequencing has been validated as a clinical solution via trusted workflows, and coinciding with the technological developments driving costs lower, we can expect accelerated human genome profiling for clinical Dx. How soon, do you think, will we see accelerated growth and what can we expect?

A: We will see accelerated human genome profiling for clinical Dx in 2019 and the coming years as more biomarker-based cancer drugs are gaining approval.

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Interview with Iya Khalil of GNS Healthcare

Q: Artificial intelligence (AI) techniques have sent vast waves across healthcare, even fueling an active discussion of whether AI doctors will eventually replace human physicians in the future. Do you believe that human physicians will be replaced by machines in the foreseeable future? What are your thoughts?

A: I think that there’s a lot of speculation and uncertainty around AI, but I don’t foresee a time when we won’t need physicians.

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Interview with Ilya Michael Rachman of Immix Biopharma Inc.

Q: The Nobel Price in Medicine was awarded recently to James Allison and Tasuku for their work on unleashing the body’s immune system to attack cancer, a breakthrough that has led to an entirely new class of drugs and brought lasting remissions to many patients who had run out of options. The Nobel committee hailed their accomplishments as establishing “an entirely new principle for cancer therapy.” Besides CAR T-cell therapy what do you think next generation immunotherapies will look like to successfully combat cancer?

A: The next generation of immunotherapies will build on the insights discovered by immunologists like James Allison and Tasuku Honjo and extend them to modify the body’s response to tumors.

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Join me to Kick off PMWC Silicon Valley in the Santa Clara Convention Center, Focusing on Every Element of Precision Medicine

My team worked in collaboration with Bill Dalton, Kim Blackwell, Atul Butte / India Hook Barnard, Nancy Davidson and Sharon Terry to create a program that touches every component of precision medicine while bringing together all of its key stakeholders. Leading participating institutions including Stanford Health Care, UCSF, Duke Health, Duke University, John Hopkins University, University of Michigan and more will share their learnings and experiences and their successes and challenges, as they make precision medicine the new standard of care for all.

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Interview with Dominic Eisinger of Myriad RBM

Q: The Nobel Price in Medicine was awarded recently to James Allison and Tasuku for their work on unleashing the body’s immune system to attack cancer, a breakthrough that has led to an entirely new class of drugs and brought lasting remissions to many patients who had run out of options. The Nobel committee hailed their accomplishments as establishing “an entirely new principle for cancer therapy.” Besides CAR T-cell therapy what do you think next generation immunotherapies will look like to successfully combat cancer?

A: Next generation immunotherapies include CAR-Ts, TCRs, cancer vaccines, ADCs, bi-specific antibodies, and checkpoint inhibitors.

Read More

2018 Year in Review Milestones: Stakeholder Partnerships Carving Precision Medicine’s Future

2018 has clearly been a year when significant opportunities intersected with strong partnerships to yield advancements. In particular, the clinical advancements that were realized are a testimony to stakeholders working together to deliver on promises affecting major aspects of precision medicine. 2018 has clearly been a year when significant opportunities intersected with strong partnerships to yield advancements.

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Interview with Lisa Alderson of Genome Medical

Q: Tell us a little bit about Genome Medical. What market need is Genome Medical addressing and how?

A: Genome Medical is a telegenomics company that is bridging the gap between available, genetic expertise and the clinical application of genomics.

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Interview with Nasir Bhanpuri of Virta Health

Q: What need is Virta Health addressing?

A: Virta Health delivers an evidence-based treatment to safely and sustainably reverse type 2 diabetes without the use of medications or surgery. In the U.S. alone, type 2 diabetes and prediabetes affects 115 million people, and the economic burden is well-over $300 billion and growing.

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Johns Hopkins
University Of Michigan

The Precision Medicine World Conference (PMWC), in its 17th installment, will take place in the Santa Clara Convention Center (Silicon Valley) on January 21-24, 2020. The program will traverse innovative technologies, thriving initiatives, and clinical case studies that enable the translation of precision medicine into direct improvements in health care. Conference attendees will have an opportunity to learn first-hand about the latest developments and advancements in precision medicine and cutting-edge new strategies and solutions that are changing how patients are treated.

See 2019 Agenda highlights:

  • Five tracks will showcase sessions on the latest advancements in precision medicine which include, but are not limited to:
    • AI & Data Science Showcase
    • Clinical & Research Tools Showcase
    • Clinical Dx Showcase
    • Creating Clinical Value with Liquid Biopsy ctDNA, etc.
    • Digital Health/Health and Wellness
    • Digital Phenotyping
    • Diversity in Precision Medicine
    • Drug Development (PPPs)
    • Early Days of Life Sequencing
    • Emerging Technologies in PM
    • Emerging Therapeutic Showcase
    • FDA Efforts to Accelerate PM
    • Gene Editing
    • Genomic Profiling Showcase
    • Immunotherapy Sessions & Showcase
    • Implementation into Health Care Delivery
    • Large Scale Bio-data Resources to Support Drug Development (PPPs)
    • Microbial Profiling Showcase
    • Microbiome
    • Neoantigens
    • Next-Gen. Workforce of PM
    • Non-Clinical Services Showcase
    • Pharmacogenomics
    • Point-of Care Dx Platform
    • Precision Public Health
    • Rare Disease Diagnosis
    • Resilience
    • Robust Clinical Decision Support Tools
    • Wellness and Aging Showcase

See 2019 Agenda highlights:

    • Five tracks will showcase sessions on the latest advancements in precision medicine which include, but are not limited to:
      • AI & Data Science Showcase
      • Clinical & Research Tools Showcase
      • Clinical Dx Showcase
      • Creating Clinical Value with Liquid Biopsy ctDNA, etc.
      • Digital Health/Health and Wellness
      • Digital Phenotyping
      • Diversity in Precision Medicine
      • Drug Development (PPPs)
      • Early Days of Life Sequencing
      • Emerging Technologies in PM
      • Emerging Therapeutic Showcase
      • FDA Efforts to Accelerate PM
      • Gene Editing / CRISPR
      • Genomic Profiling Showcase
      • Immunotherapy Sessions & Showcase
      • Implementation into Health Care Delivery
      • Large Scale Bio-data Resources to Support Drug Development (PPPs)
      • Microbial Profiling Showcase
      • Microbiome
      • Neoantigens
      • Next-Gen. Workforce of PM
      • Non-Clinical Services Showcase
      • Pharmacogenomics
      • Point-of Care Dx Platform
      • Precision Public Health
      • Rare Disease Diagnosis
      • Resilience
      • Robust Clinical Decision Support Tools
      • Wellness and Aging Showcase
  • Luminary and Pioneer Awards, honoring individuals who contributed, and continue to contribute, to the field of Precision Medicine
  • 2000+ multidisciplinary attendees, from across the entire spectrum of healthcare, representing different types of companies, technologies, and medical centers with leadership roles in precision medicine
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