The Masonic Cancer Center, a Consortium member, has announced its first Chainbreaker Breakthrough Cancer Research Grant, which was awarded to a multidisciplinary group of scholars at the University of Minnesota. The team will focus on the connections between microorganisms and cancer, as both potential causes of and treatments for the disease, and will be co-led by Timothy K. Starr, PhD, Assistant Professor, Obstetrics, Gynecology and Women’s Health, and Alexander Khoruts, MD, Professor of Medicine in the Division of Gastroenterology, Hepatology and Nutrition. The funds for the grant were derived from last year's inaugural Chainbreaker Ride, a two-day bike tour that raised $1.4 million for cancer research. This year's ride begins on Aug. 10, and will include more than 1000 riders who will pedal distances ranging from 25 to 180 miles. Can't ride? You can still help as a "virtual rider" who works to raise funds or serve as a volunteer; learn more here.
The perils of the Big Data era seem to increase every day. The most recent area under scrutiny is the use of personal data by health insurers to track "race, education level, TV habits, marital status, net worth. . . what you post on social media, whether you're behind on your bills, [and] what you order online," according to a new investigative report by ProPublica and NPR. The article notes, "At a time when every week brings a new privacy scandal and worries abound about the misuse of personal information, patient advocates and privacy scholars say the insurance industry’s data gathering runs counter to its touted, and federally required, allegiance to patients’ medical privacy. The Health Insurance Portability and Accountability Act, or HIPAA, only protects medical information." Patient advocates are concerned data will be used to set insurance rates and can lead to false assumptions about health-related habits, even though it may be factually incorrect. Prof. William McGeveran of the University of Minnesota Law School, contrasts the robust marketplace for personal data in the US to Europe, where "data protection is a constitutional right." McGeveran is a member of the working group for the Consortium's LawSeqSM project.
The advocacy group Public Citizen has filed a complaint with the FDA and Office for Human Research Protections about trials conducted at Hennepin Healthcare (formerly Hennepin County Medical Center), in which paramedics used the sedative ketamine to treat "prehospital agitation." The letter is signed by dozens of bioethicists and medical experts, including Carl Elliott and Leigh Turner of the University of Minnesota Center for Bioethics, a Consortium member. According to reporting in the Washington Post, during the 4-year study "paramedics used either the anesthetic ketamine or a different powerful drug to sedate patients. . . . Patients or caregivers were not asked for permission to participate, and they were informed only later that they had become part of a medical experiment." Previous research, also conducted by Hennepin Healthcare, demonstrated that ketamine frequently causes complications that require patients by intubated. Regarding the recently halted study that was the catalyst for the complaint, Leigh Turner notes, “Even if there’s a case for using these drugs, there’s a case for being very judicious about when to use it.” He also expressed concern about the danger of the study influencing decisions by paramedics: “That’s going to lead to a reduction in the scope of clinical judgment, where EMS doesn’t have the full array of medications. The study is playing a role in which medication people get,” Turner said.
The National Academies of Sciences, Engineering, and Medicine have released a new consensus report on returning individual research results, which offers a process-oriented approach that considers the value to the participant, the risks and feasibility of return, and the quality of the research laboratory. The committee that created the report was chaired by Jeffrey R. Botkin (University of Utah School of Medicine) and also included Wylie Burke (University of Washington), Vanessa Northington Gamble (George Washington University), Amy L. McGuire (Baylor College of Medicine) and Consuelo H. Wilkins (Vanderbilt University Medical Center and Meharry Medical College), all of whom are Consortium collaborators. Prof. Wilkins is on the planning committee and will be speaking at our forthcoming conference, Law, Genomic Medicine & Health Equity: How Can Law Support Genomics and Precision Medicine to Advance the Health of Underserved Populations? Learn more about the conference here.
The University of Minnesota Board of Regents has approved the appointment of Jakub Tolar to the newly created position of Vice President for Clinical Affairs at the University's Academic Health Center (AHC). Prof. Tolar had previously been named as Dean of the Medical School and Interim Vice President for Health Sciences; his new titles of VP for Clinical Affairs and Dean of the Medical School reflect continuing restructuring of the AHC, which is intended to streamline the oversight process. In addition to his roles as VP and Dean, Tolar is Director of the Stem Cell Institute, a Consortium member center; Distinguished McKnight Professor in the Department of Pediatrics; Edmund Wallace Tulloch and Anna Marie Tulloch Chair in Stem Cell Biology, Genetics and Genomics; and Professor in the Microbiology, Immunology and Cancer Biology (MICaB) PhD Graduate Program.
According to an article in Scientific American, "Several DNA testing companies have volunteered their services to help reunite immigrant families separated at the southern U.S. border. But scientists and ethicists warn broad-based genetic tests are 'overkill' and do not make sense for making such matches." Consortium chair Susan M. Wolf is among them; she raises concerns about whether permission to undergo genetic testing in such circumstances is really given freely, one of the core requirements for obtaining informed consent — the article notes, "a parent faced with not getting their child back if they do not get a genetic test really has no option." Wolf goes on to point out problems with defining "family" solely by biological relationship: “What about the loving long-time caregiver who may not be genetically related to that child? Those families deserve reunification, too.” Despite such concerns, The Atlantic reports that the US Department of Health and Human Services announced last week that it will conduct DNA tests in an attempt to comply with a court order from the US District Court in San Diego. The court declared that all minors from separated families need to be reunited with their parents or guardians by July 26.