On June 26, the National Human Genome Research Institute (NHGRI) at NIH celebrated the 20th anniversary of a milestone in genomics. On that date in 2000, then-President Clinton announced the release of a working draft sequence of the human genome in a White House ceremony. In the years since then, the Consortium has collaborated on multiple projects to address ethical, legal, and societal issues related to genomics. Examples include LawSeqSM, an NIH-funded research project that led to the creation of a database of federal and state laws on genomics, the Minnesota Precision Medicine Collaborative, and research on return of genomic results and incidental findings to study participants.
Members of the Minnesota COVID Ethics Collaborative (MCEC) and key partners in the Minnesota Department of Health (MDH) have published a new article in Mayo Clinic Proceedings on the development of an ethical framework for Minnesota’s allocation of remdesivir, an experimental drug used to treat COVID-19. The authors illuminate the “real-time” bioethics process used to cope with urgent need, resource scarcity, and a still-emerging evidence base. The article can help other states and agencies determine how to allocate remdesivir. MCEC is co-led by Profs. Debra DeBruin at the University’s Center for Bioethics and Susan M. Wolf at the Consortium.
In an article on “Stolen Breaths” in the New England Journal of Medicine, Professor Rachel Hardeman and co-authors powerfully argue that “for the health of the black community and, in turn, the health of the nation, we address the social, economic, political, legal, educational, and health care systems that maintain structural racism.” The authors recommend five practices for health care systems to implement. Professor Hardeman is a faculty member in the University of Minnesota’s School of Public Health and an Affiliate Faculty Member in the Center for Bioethics, a Consortium Member Center. To read the article, see the New England Journal of Medicine website.
The American Bar Association Journal recently spotlighted Professor Francis Shen’s work in a feature story about investment in neurolaw. Professor Shen’s Neurolaw Lab at the University of Minnesota Law School studies a range of issues including dementia, brain injury, and the law. He is also leading research on the challenges raised by emerging neuroimaging technology and is an Affiliate Faculty Member in the Consortium. Read more at the ABA Journal website.
In a paper recently published in Stem Cell Reports, Dr. Daniel Garry of the Stem Cell Institute and co-authors discuss ethical issues raised by the use of chimeras for research purposes and human organ transplants. The article focuses on pig-human chimeras to generate blood vessels and blood products for use in humans. Progress in this field can help address the persistent gap between the number of people in need of a transplant and available organs. The Stem Cell Institute is a Consortium member center. Information on the paper is posted on the Stem Cell Institute website; read the paper here.
The Center for Infectious Disease Research and Policy (CIDRAP) has published “Smart testing for COVID-19 virus and antibodies,” the third in a series of reports focused on the COVID-19 pandemic. The report includes a proposal for a smart testing framework and offers considerations for policy makers, public health agencies, hospital administrators, and the public. CIDRAP also recommends that the U.S. Secretary of Health and Human Services (HHS) appoint a blue-ribbon panel of national experts by July 1, and that HHS review and evaluate the public health response of governments from around the globe in order to determine best practices for the U.S. response. CIDRAP is a Consortium member center. More information is available on the CIDRAP website here; view all CIDRAP reports on the COVID-19 pandemic here. Read a Star Tribune article about the report and other issues facing COVID-19 testing here.
Remdesivir is the only drug found so far to potentially shorten recovery time from COVID-19. On May 1, the U.S. Food and Drug Administration authorized emergency use of this antiviral medication for patients with severe disease. The Minnesota Department of Health has worked with the Minnesota COVID Ethics Collaborative (MCEC) to create an ethical framework for distributing the state’s allocation of the drug. MCEC is co-led by Profs. Debra DeBruin and Susan M. Wolf. DeBruin is Interim Director of the Center for Bioethics, a Consortium member center, and Wolf is Chair of the Consortium. Read the “Ethical Framework for May 2020 Allocation of Remdesivir in the COVID-19 Pandemic” here. More information about the challenges of allocating remdesiver is available here.
The University of Minnesota has announced a $35 million grant from Minnesota Masonic Charities that will be used to create the Masonic Institute for the Developing Brain. This interdisciplinary institute will be led by the Medical School and College of Education and Human Development (CEHD), focusing on typical and disordered neurodevelopment from birth through adolescence. The institute will be co-directed by Drs. Michael Georgieff, Director of the Center for Neurobehavioral Development (a Consortium member), and Damien Fair, who will join the faculty in July from Oregon Health & Science University. More information is available here.
The Strategic Partnerships and Research Collaborative (SPARC) is the Consortium’s newest member center, elected by vote of the current members. SPARC was established at the U in January 2019 as an innovation and research hub, and is led by Professors Amy Kircher, DrPH, and Katey Pelican, PhD, DVM. SPARC engages researchers across a wide range of disciplines for large-scale programs and grant proposals at the intersection of science and society. Find out more about SPARC here.
The Consortium’s NIH-funded grant on the law of genomics, led collaboratively with Vanderbilt University, has just published a major symposium in the Journal of Law, Medicine & Ethics on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." The symposium features three open-access articles offering recommendations on legal changes to address liability threats, quality challenges in genomics, and confusion between different domains of genomics (research, clinical care, public health, and direct-to-consumer). Additional articles address further legal and policy challenges including privacy and research participant protections, stakeholder perceptions, and sound regulatory approaches. The full symposium is available online and on the Consortium website.