Personalized Medicine and the Patient

November 14 – 15, 2022 • Hotel Commonwealth, Boston, MA


Summit Sessions

In the Fenway Ballroom

7:30 a.m.
Registration and Breakfast
8:15 a.m.
Opening Remarks

SPEAKER | Edward Abrahams, Ph.D., President, Personalized Medicine Coalition

8:20 a.m.
Pursuing ‘the Science of the One:’ A Keynote Address on the Status and Outlook for Personalized Medicine in a Post-Pandemic World

With entire nations in the throes of the Covid- 19 pandemic in 2020, Siddhartha Mukherjee urged researchers to count viral spread “within people” as well as “across peoples.” The “science of aggregation,” he explained in an essay published by The New Yorker on April 6, 2020, is most effective when it moves in step with “the science of the one.” During this opening keynote presentation, the globally renowned author of The Emperor of All Maladies and The Gene: An Intimate History will provide an update on his thinking about the status and outlook for personalized medicine in a post-pandemic world.

INTRODUCTION | Raju Kucherlapati, Ph.D., Paul C. Cabot Professor of Genetics, Harvard Medical School

KEYNOTE SPEAKER | Siddhartha Mukherjee, M.D., D.Phil., Assistant Professor of Medicine, Columbia University

9:00 a.m.
Foretelling the ‘Dreaded Disease:’ A Panel Discussion About Communicating with Patients in the Era of Pre-Screening and Early Cancer Detection

Game-changing early detection. Pre-screening for genetic risk factors. In the era of personalized medicine, biomarker-based cancer diagnostics are captivating the public imagination based on their potential to help physicians get ahead of the second-leading cause of death in the United States. Against this backdrop, test developers, a patient advocate, a representative from a leading cancer center, and a medical geneticist will discuss strategies for communicating with patients about the complexities of the “dreaded disease.”

MODERATOR | William Dalton, Ph.D., M.D., Founder and Senior Advisor, M2Gen

David Bakelman, CEO, National Pancreas Foundation

Kevin Conroy, Chairman and CEO, Exact Sciences

Robert C. Green, MD, MPH, Professor of Medicine (Genetics), Mass General Brigham and Harvard Medical School

Joshua Ofman, M.D., MSHS, President, GRAIL

Sapna Syngal, M.D., Strategic Planning Director, Prevention and Early Cancer Detection, Dana Farber Cancer Institute

10:00 a.m.
Networking Break

Sponsored by

10:30 a.m.
Biology and Beyond: A Panel Discussion About the Importance of Accounting for Biological, Environmental, and Social Factors in Personalized Medicine

In 2021, a steering committee of patients and patient advocates came together to support the launch of a Personalized Medicine Coalition educational platform that encourages patients to advocate for health care tailored not only to their biological characteristics, but also to their circumstances and values. The online resource promises to broaden public understanding of what it means to personalize health care. During this panel discussion, the nationally recognized patient advocates leading the More Than a Number initiative will discuss the importance of enhancing patient-provider interactions with attention to the full scope of biological, environmental, and social factors that impact the health and well-being of every individual.

MODERATOR | Faswilla Sampson, Chief Operating Officer, Personalized Medicine Coalition

Deanna Darlington, President, Links2Equity

Candace Henley, Founder, Blue Hat Foundation

Sarah Krüg, Executive Director, Cancer101

11:15 a.m.
Presentation of the 17th Annual Award for Leadership in Personalized Medicine

The Annual Award for Leadership in Personalized Medicine recognizes an individual whose contributions in science, business, and policy have helped advance the frontiers of the field. This year’s award goes to pioneering genomics researcher Geoffrey Ginsburg. Long recognized by his colleagues as a founder and luminary, Dr. Ginsburg’s work emphasizes the importance of translating emerging discoveries in genomics and personalized medicine into improved health outcomes for all patients. In November of 2021, the National Institutes of Health selected Dr. Ginsburg as the Chief Medical and Scientific Officer of the All of Us Research Program, a flagship initiative in personalized medicine distinguished for its emphasis on diversity and inclusion.

PRESENTER | Jay G. Wohlgemuth, M.D., Chief Medical Officer, Senior Vice President, Quest Diagnostics

AWARDEE | Geoffrey Ginsburg, M.D., Ph.D., Chief Medical and Scientific Officer, All of Us Research Program, U.S. National Institutes of Health

11:45 a.m.
Diversity, Equity, and Inclusion in Personalized Medicine: A Panel Discussion on How Personalized Medicine Can Improve Care for Diverse Patient Populations

Personalized medicine calls for a more diverse, equitable, and inclusive biomedical research enterprise that can provide reliable evidence about the ways in which various health care interventions may affect subsets of heterogenous patient populations. It also calls for clinical interactions tailored more closely to patients’ circumstances, preferences, and cultural backgrounds. During this panel discussion, a diverse group of health care leaders will explain how a focus on personalized medicine will improve patient care.

MODERATOR | James W. Lillard, Ph.D., Senior Associate Dean, Morehouse School of Medicine

Donna R. Cryer, J.D., President, CEO, Global Liver Institute

Omar A. Escontrías, DrPH, MPH, Vice President, Research, Education & Programs, National Health Council

Pari Johnston, Vice President, Policy and Public Affairs, Genome Canada

12:30 p.m.
Lunch Break
1:30 p.m.
Streamlining the Patient Experience: A Panel Discussion on Strategies for Ensuring Patient Access to Tailored Health Care

Prior authorization. Informed consent. And, too often, a diagnostic odyssey. The complexities of the health care system can be exasperating. During this panel discussion, a caregiver, a payer, a pharmaceutical industry representative, and a health system administrator will discuss strategies for ensuring patient access to high-quality health care tailored to each patient’s needs.

MODERATOR | Alan Balch, Ph.D., CEO, National Patient Advocate Foundation

J. Michael Graglia, Co-Founder, Managing Director, SynGAP Research Fund

Tammy McAllister, Operations Administrator, Center for Individualized Medicine, Mayo Clinic

John M. O’Brien, Pharm.D., President, CEO, National Pharmaceutical Council

Susan Perry, Head of Strategy and Operations, Office of the Chief Medical Officer, Point32Health

2:15 p.m.
Mila’s Story and the Future of ‘N-of-One’ Therapies: A Fireside Chat About Lessons Learned from the Development of a Therapy for a Single Patient

In October of 2019, Dr. Timothy Yu of Boston Children’s Hospital co-authored a landmark paper in The New England Journal of Medicine reporting the successful administration of an “n-of-one” therapy specially designed for Mila Makovec, an eight-year-old patient with an ultra-rare neurological disorder. The development of the therapy points to the rapidly expanding possibilities in personalized medicine. It also raises questions about how to regulate and pay for n-of-one therapies in the future. During this fireside chat, Mila’s mother will join Dr. Yu to reflect on their experiences and consider the future of personalized medicine for patients with rare diseases.

MODERATOR | Walter Kowtoniuk, Ph.D., Venture Partner, Third Rock Ventures

Julia Vitarello, Mila’s mom; CEO, Mila’s Miracle Foundation; Co-Founder, N=1 Collaborative

Timothy Yu, M.D., Ph.D., Staff Physician & Investigator, Division of Genetics and Genomics, Boston Children’s Hospital; Co-Founder, N=1 Collaborative

2:45 p.m.
Networking Break
3:15 p.m.
Purpose and Progress in Pharmacogenomics: A Patient Narrative, a Pilot Program, and the Evolving Prospects for Genetically Based Prescribing Practices

During this panel discussion on the future of pharmacogenomics, a patient harmed by severe side effects from an antibiotic will reflect on the shortcomings of one-size-fits-all prescribing practices; a provider of pharmacogenetic testing services will review data from a pilot program showing the clinical and economic advantages of selecting and dosing drugs based on each patient’s genetic characteristics; and the executive director of precision health at a leading health system will identify the obstacles still slowing the uptake of pharmacogenetic testing in clinical settings.

MODERATOR | Cynthia A. Bens, Senior Vice President, Public Policy, Personalized Medicine Coalition

Rachel Brummert, Patient Advocate; Communications Lead, American Society of Pharmacovigilance

Howard McLeod, Pharm.D., Executive Clinical Director, Precision Health, Intermountain Healthcare

Jeffrey A. Shaman, PhD, MS, Chief Science Officer, Coriell Life Sciences

4:00 p.m.
Closing Remarks

SPEAKER | Lindsay Stephens, Program Manager, Secretary to the Board, Personalized Medicine Coalition; Diagnosed with breast cancer in 2021

Welcome Reception

In the Fenway Foyer

6:00 p.m.
Welcome Reception

We will convene in the Fenway Foyer for drinks and hors d’oeuvres.