The latest issue of Minnesota Medicine features an article by Consortium Chair Susan M. Wolf about the legal and regulatory underpinnings needed to advance genomic medicine. It is part of a special issue on the future of medicine, and provides an overview of the NIH-funded LawSeqSM project Wolf co-leads with Ellen Wright Clayton (Vanderbilt University) and Frances Lawrenz (University of Minnesota). LawSeqSM is dedicated to analyzing current US federal and state law and regulation on translational genomics. Results of the effort will be the development of consensus guidance on what the law should be, as well as the creation of a website aggregating the statutes, regulations and case law related to genomic medicine. The Minnesota Medicine article was co-authored by Kathryn Grimes, Communications Director for the Consortium.
ClinGen, a public genomic variant database, has been formally recognized by U.S. Food and Drug Administration (FDA) as a source of "valid scientific evidence that can be used to support clinical validity." This step is significant because it certifies that ClinGen provides accurate, accessible data to researchers who are developing genetic tests to help increase understanding of the causes of disease by researchers and health care providers, with the ultimate outcome of improving patient care. According to the FDA, "ClinGen brings together more than 700 clinical and research experts to develop standard processes for reviewing data and genetic variants and their connections to health and disease. The experts who are part of the consortium determine how each variant is associated with a specific hereditary disease or condition and make that information available for unrestricted use in the community." The Principal Investigator for the ClinGen project is Heidi Rehm; she outlined the need for undertaking this work and the challenges to correctly interpreting genetic variants in a Consortium-sponsored lecture you can view here.
On Thursday, Nov. 29 a group of eminent scholars and researchers convened at Meharry Medical College in Nashville to evaluate the current state of precision medicine and how access to it can be improved. Conference presenters shared a wide-ranging array of information about obstacles and solutions to delivering genomic medicine in clinical settings, with a particular focus on policies to promote health equity. The event, which involved several dozen in-person attendees and 200 webcast viewers, concluded with a talk by Consuelo H. Wilkins (Meharry-Vanderbilt Alliance). Prof. Wilkins described her work with the federal All of Us Research Program, for which she serves as head of the Engagement Core. She emphasized the need to address the underrepresentation of minority populations in research, as well as mistrust and limited genomic literacy. One of the important takeaways from Prof. Wilkins' talk was the need to reframe the benefits to research participants of collaborating in studies, from returning results to returning value – that is, information these communities find useful. The event was presented by the Meharry-Vanderbilt Alliance, Vanderbilt University Medical Center, the Consortium, and the Minnesota Precision Medicine Collaborative. A special symposium based on the conference will be published in and issue of Ethnicity & Disease guest edited by Marino Bruce (Vanderbilt University), Vence L. Bonham (National Human Genome Research Institute - NHGRI) and Consortium Chair Susan M. Wolf (University of Minnesota). Video of conference sessions will be posted in the next 10 days; to receive notification, please email firstname.lastname@example.org.
Doctors at a London hospital are being sued "because they failed to tell [a woman] about her father’s fatal hereditary disease before she had her own child," according to the Guardian. "The woman discovered – after giving birth – that her father carried the gene for Huntington’s disease, a degenerative, incurable brain condition. Later she found out she had inherited the gene and that her own daughter, now eight, has a 50% chance of having it. The woman. . . says she would have had an abortion had she known about her father’s condition, and is suing the doctors who failed to tell her about the risks she and her child faced. It is the first case in English law to deal with a relative’s claim over issues of genetic responsibility." Much of the groundwork for US legal and policy approaches to these complicated issues can be found in a symposium, "Should We Offer Genomic Research Results to a Participant's Family, Including After the Participant's Death?" edited by Consortium Chair Susan M. Wolf, Barbara A. Koenig (UCSF) and Gloria M. Petersen (Mayo Clinic). The symposium grew out of an NIH-funded grant, "Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment," for which Wolf, Koenig and Petersen served as Principal Investigators.
Prof. Lynn Blewett (School of Public Health) will be teaching a Directed Study course, PubH 8893/Section 003, on health policy during the spring semester. It's intended for students who'd like to discuss current topics, including activities at state and national legislatures. Students will work with Prof. Blewett to determine proposed work for credit. Projects include: selecting, tracking and documenting a specific piece of legislation as it works through the legislative process; working on a chapter for book on State Health Policy; research and analysis of current health policy issue; attending legislative hearings, interviewing legislators and stakeholders; and writing up pros and cons of health policy issues. Interested students should email email@example.com for permission number.
On Tuesday, Nov. 27, Oron Catts will delivery a lecture entitled "Biology on the Pedestal" at the Weisman Art Museum. Catts is the director of SymbioticA, a center dedicated to the biological arts at the University of Western Australia. He is an artist, researcher, designer and curator whose pioneering work, the Tissue Culture and Art Project, is considered a leading biological art project. Catts’ ideas and projects reach beyond the confines of art; his work is often cited as inspiration to diverse areas such as new materials, textiles, design, architecture, ethics, fiction, and food. He is recognized worldwide for creating a unique model of cross-disciplinary integration where artistic thought and hard science seamlessly blend into a single creative research process. This event is co-presented by the Weisman Art Museum, the BioTechnology Institute, a Consortium member, and the University of Minnesota Medical School; learn more and register here.
According to a report from National Public Radio, "In Sweden, a country rich with technological advancement, thousands have had microchips inserted into their hands. The chips are designed to speed up users' daily routines and make their lives more convenient — accessing their homes, offices and gyms is as easy as swiping their hands against digital readers." On April 3, 2019, a free, public lecture and webcast will feature Prof. Lisa Ikemoto (UC Davis School of Law) discussing "Biohacking and Cyborg Rights." Her talk is part of this year's Consortium lecture series, "Consumer-driven and DIY Science," which will also feature Sharon Terry (Genetic Alliance) and Michael Imperiale (University of Michigan).
A new study published in the journal Cell demonstrates that the American diet has nearly immediate effects on the human microbiome. The lead author of the article is Dan Knights of the University of Minnesota; as he tells the Washington Post, "We found that moving to a new country changes your microbiome. You pick up the microbiome of the new country and possibly some of the new disease risks that are more common in that country." In the case of people moving from Southeast Asia to the United States, their "gut diversity dropped to resemble the less-varied microbiomes in European Americans. At the same time, obesity rates spiked." Prof. Knights is renowned for his work using computational methods to better understand the human microbiome and develop precision medicine therapies. He was the commentator for a Consortium-sponsored lecture, "The Evolving Human Microbiome," by Alexander Khoruts, also of the University of Minnesota. Watch the video of that lecture here.
Earlier this month, the Intergovernmental Panel on Climate Change (IPCC) released an alarming report forecasting the effects of global warming above 1.5°C when compared to pre-industrial levels. The IPCC whitepaper predicted massive forest fires, widespread drought and increasingly violent storms in the coming decades, and called for the complete elimination of the use of fossil fuels by 2050. Given the dire outlook, it's tempting to succumb to despair and inertia. However, local environmentalists are both calling for positive action and taking steps in their personal lives to help address the problem. According to the Star Tribune, among those working on small-scale solutions is Jessica Hellmann, Director of the Institute on the Environment, a Consortium member. Prof. Hellmann's family has installed solar panels on their St. Paul home; she is renowned for her advocacy of not simply working to stem climate change, but also plan for adaptation in the face of a warmer planet. “The narrative is that we’re going to have to … sit in the dark in a cave. The life that alternative technologies can provide is pretty enriching,” she said. Read the entire article here.
Minnesota inventor Earl E. Bakken, best known as the founder of global medical device company Medtronic, has died at his home in Hawaii. Bakken was born in Columbia Heights and graduated from the University of Minnesota with a BA in electrical engineering in 1948. An inveterate tinkerer from an early age, Bakken invented the first wearable, battery-powered, transistorized cardiac pacemaker in 1957 at the request of University of Minnesota heart surgeon C. Walton Lillehei. A Minnesota Public Radio obituary explains that he founded Medtronic because he "saw a need for skilled maintenance and repair of electronic medical technology." Bakken noted, "'The hospitals were bringing this equipment to radio shops.'" Later in life, Bakken became a philanthropist; among his many good works was funding the University's Center for Spirituality and Healing, a Consortium member, which changed its name to honor him in 2017. Photo courtesy Bobak Ha'Eri via the Creative Commons.