Policy, legal approaches key to health equity in precision medicine
National conference will propose tools to increase access to new and emerging treatments
Genomics has a diversity problem. Despite the dazzling promise of genetically-tailored treatments and therapies, fundamental questions remain about whether precision medicine will advance health equity or make disparities worse. On November 29, 2018, a national conference and webcast at Meharry Medical College in Nashville will be the first to focus on the role law and policy must play to ensure precision medicine increases health equity and access.
Despite the increasing diversity of the US, the research driving precision medicine has been based on a population that is overwhelmingly white and European in ancestry. This has serious scientific implications. As Vence Bonham, Jr., of the National Institutes of Health (NIH) has written in a JAMA article he co-authored, “Gaining complete insights about the relative roles of genomic variation, social context, and physical environment in human traits, health, and disease requires greater participation of individuals with ancestors from all regions of the world.” What is keeping more people from research participation? Among their worries may be surrendering sensitive health information for inclusion in large databases, as well as fear of privacy breaches, data misuse, and discrimination. All of these concerns require careful consideration of whether law and policy provide adequate protection for patients and research participants.
The Nov. 29 event will also examine the obstacles currently blocking the widespread adoption of genomic medicine, and ask what legal and policy approaches will maximize access to it in the future. For example, what laws and policies will guarantee that insurance or social safety-net programs cover the cost of genomic analysis and access to the individualized care that precision medicine offers? Ensuring such access is of particular importance for economically disadvantaged people, including those who lack insurance or are under-insured.
Meharry-Vanderbilt Alliance Executive Director Consuelo H. Wilkins, MD, MSCI, a featured speaker at the conference who is spearheading participant engagement efforts for the federal All of Us precision medicine program, is renowned for her work getting racial and ethnic minorities involved in research. She notes, “Precision medicine looks beyond people as members of a group to consider them as individuals. If we’re really serious about addressing health disparities, we need to build an inclusive process that considers biology, genetics, culture and environment when developing tailored therapies and putting them into clinical practice.”
This conference and webcast is sponsored by the Meharry-Vanderbilt Alliance; Vanderbilt University Medical Center; the University of Minnesota’s Consortium on Law and Values in Health, Environment & the Life Sciences; and the Minnesota Precision Medicine Collaborative. It is part of the National Institutes of Health-funded LawSeqSM project, which is dedicated to building a sound legal foundation for translating genomics into clinical application.
Law, Genomic Medicine & Health Equity:
How Can Law Support Genomics and Precision Medicine to Advance the Health of Underserved Populations?
November 29, 2018 – 8:00am to 2:00pm
Meharry Medical College, Nashville, TN
Free and open to the public
For information, to attend or set up an interview, contact:
About the Meharry-Vanderbilt Alliance
Founded in 1999, the Alliance bridges the institutions of Meharry Medical College and Vanderbilt University Medical Center. Its mission is to enrich learning and advance clinical research in three primary areas – community engagement, interprofessional education and research – by developing and supporting mutually beneficial partnerships between Meharry Medical College, Vanderbilt University Medical Center and the communities they serve.
About Vanderbilt University Medical Center
Vanderbilt University Medical Center is one of the nation’s leading academic medical centers and is the largest comprehensive health system in Tennessee. Its core missions are the delivery of patient care, performing biomedical research and training future leaders in health care.
About the Consortium on Law and Values in Health, Environment & the Life Sciences
Since 2000, the University of Minnesota’s Consortium on Law and Values in Health, Environment & the Life Sciences has conducted original research, served students and faculty, and advanced public dialogue and understanding on emerging issues at the intersection of science and society. Visit consortium.umn.edu to learn more.
About the Minnesota Precision Medicine Collaborative
The Minnesota Precision Medicine Collaborative (MPMC) at the University of Minnesota was established in late 2017 as a transformative initiative to use 21st-century technologies – including genomics, informatics, bioengineering, analysis of environmental exposures, and behavioral sciences – to tailor health care to the challenges facing individuals and their communities. MPMC aims to make a unique contribution through collaborative research, cutting-edge innovation, responsible policy, and sustained commitment to improving health equitably across our communities.