In an article appearing in the Oct. 12 issue of Science, Consortium Chair Susan M. Wolf and Barbara J. Evans of the University of Houston Law Center sound the alarm about a recent report from the National Academies of Sciences, Engineering, and Medicine. The Academies' report on "Returning Individual Research Results to Participants" makes recommendations on how to share research results and data with people who agree to participate in research studies and calls for problematic changes to federal law. In Science, Wolf and Evans argue that the Academies' recommendations are "rooted in confusion about the law." They maintain that "The Academies' report endorses the idea of participant access to results and data, but then builds daunting barriers. The report rejects established legal rights of access, two decades of consensus guidelines, and abundant data showing that participants benefit from access while incurring little risk. The report too often prefers paternalistic silence over partnership. . . . True progress on return of results requires accepting participants' established rights of access and respecting the value that participants place on broad access to their data and results. The next step is not to build barriers but to promote transparency." Read the entire Science article here.
A new public service announcement (PSA) from Masonic Cancer Center, a Consortium member, offers a fun and accessible take on a health behavior that can help fight cancer: eating your vegetables. The 2-minute video clarifies the research basis for the claim and explains the basics of choosing which veggies to eat; check it out here. This PSA is one of four created to share MCC's cancer knowledge and research with the community. They will be broadcast on public television stations around the state of Minnesota. To see all of the videos, click here.
A recent Star Tribune profile of Frances Shen, JD, describes his work in neurolaw, a field he has pioneered. Prof. Shen, an affiliate member of the Consortium, focuses on the intersection of brain science, law and policy. In his research, he uses advances in scanning and other technology to better understand the connections between the brain and human behavior. He notes, “Seeing the world through brain circuitry is a really foundational shift, not just for law, but for policy. . . . A hundred years ago we just had to guess how the mind was working. And we still have to make a lot of guesses. But we know a lot more than we did . . . and it would be nice if the law caught up.” Another take on emerging technologies and the law will be presented by Lisa Ikemoto, JD, LLM (University of California, Davis) on April 3, 2019. Her lecture, "Biohacking and Cyborg RightS: Coping with Promise and Peril," will describe the work of citizen scientists and others who are working outside of academic and institutional labs to enhance human capacity. Prof. Ikemoto will examine the implications of "cyborg rights" for law and for defining the human. Her lecture is part of a series, Consumer-Driven and DIY Science. Learn more and register here.
Sepsis is a very serious illness — of the million Americans who get the disease each year, up to 30 percent will die. A large, National Institutes of Health (NIH)-funded government trial of sepsis treatments, called Clovers, is currently under attack. According to the New York Times, "In a letter to the federal Office for Human Research Protection, representatives of Public Citizen’s Health Research Group compared the study, called Clovers, to 'an experiment that would be conducted on laboratory animals.” The Times recounts, "At issue is whether patients participating in Clovers are being given treatment that deviates from usual care — so much so that lives may be endangered by the research. Participants are only enrolled for 24 hours, but the first hours of treatment are critical for survival. . . . Scientists leading the study note that treatment is not hard and fast, and insist that all participants are getting medical care that 'falls within the range of usual care.'” The Consortium is nationally recognized for its work on patient rights and research ethics in clinical trials; among our contributions are major, national conferences bringing together top policymakers, scholars and researchers to grapple with thorny issues of consent, capacity and conflicts of interest. To learn more and view videos from these conferences, visit our YouTube channel.
The Institute on the Environment (IoneE) has announced the creation of a hub that will provide the Institute's programming to students, staff, and faculty on the campus of the University of Minnesota Duluth. The new group will be led by IonE Fellow and UMD Swenson College of Science & Engineering Professor Julie Etterson, who will facilitate the expansion of IonE activities on the UMD campus and among regional partners. Etterson notes, “Over the last decade, IonE has established a record of excellence in supporting interdisciplinary research, leadership training, and cross-sector partnerships. [This offshoot] can benefit from that experience and expertise – and, because UMD is a smaller campus in a smaller city, we also have a unique capacity to cultivate interdisciplinary interactions and collaborations that address community-driven problems and have local impact.” IonE is a Consortium member center.
At a conference held last week at the Mayo Clinic, health care professionals discussed the promise and limits of genomic (also known as precision) medicine. According to the Star Tribune, while optimism is justified, Dr. Michael Joyner of Mayo cautioned that "'I like to tell people to drink the Kool-Aid in small doses.' He described a 'hype-filled biomedical narrative' that, he argues, has led people to believe that genetic medicine has accomplished more than it really has." Mayo is participating in the federal All of Us Research program, in which 100 health care organizations in the US are collecting genetic information for one million people. A free conference and national webcast being held in Nashville on Nov. 29 will take the discussion of genomic medicine a step further, focusing on legal and policy solutions to ensure precision medicine doesn't exacerbate health inequities. That event, "Law, Genomic Medicine & Heath Equity" is co-sponsored by the Meharry-Vanderbilt Alliance, Vanderbilt University Medical Center, the Consortium on Law & Values in Health, Environment & the Life Sciences and Minnesota Precision Medicine Collaborative. Learn more and register here.