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Susanna Blumenthal

Blumenthal Honored with Named Professorship

May 9, 2018

Prof. Susanna Blumenthal has been appointed to a prestigious named professorship at the University of Minnesota Law School, assuming the title of the William L. Prosser Professor of Law on May 4. She is an affiliate faculty member of the Consortium and a scholar of American legal history who is the author of Law and the Modern Mind: Consciousness and Responsibility in American Legal Culture, which is "a thoughtful study of American law’s confrontation with insanity during the 19th century." (Los Angeles Review of Books). Consortium chair Susan M. Wolf also holds a named professorship in the Law School, endowed by Faegre Baker Daniels LLP, as well as the McKnight Presidential Professorhip of Law, Medicine & Public Policy.

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New Symposium on Informed Consent in Research and Genomics

April 25, 2018

The newest issue of the Journal of Law, Medicine & Ethics is a symposium guest edited by Consortium chair Susan M. Wolf, Ellen Wright Clayton and Frances Lawrenz, Principal Investigators on the LawSeqSM project. The title is "The Future of Informed Consent in Research and Translational Medicine;" it was inspired by last year's Consortium-sponsored research ethics conference. Both the conference and the journal issue look back at the evolution of informed consent since the historic Schloendorff case was decided more than 100 years ago. It was in that opinion Justice Benjamin Cardozo declared that a competent adult “has a right to determine what shall be done with his own body” in what is now regarded as the foundational statement of a patient's right to self-determination. Read the entire issue here

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Louise Slaughter

Louise Slaughter, Lead Author of GINA, Passes Away

March 20, 2018

New York representative Louise M. Slaughter died last week at the age of 88. She was trained as a microbiologist and was one of the longest-service members of the US House of Representatives. Among her many accomplishments was serving as lead author of the Genetic Information Nondiscrimination Act (GINA) of 2008. This landmark legislation protects individuals from genetic discrimination in health insurance and employment; it was designed to help ease discrimination concerns that might keep people from getting genetic tests that could benefit their health. The law also enables people to take part in research studies without fear that their DNA information might be used against them in health insurance or the workplace. According to Eric Green of the National Human Genome Research Institute (NHGRI), "We have truly lost a genomics champion. Louise Slaughter had the vision that GINA was needed to ensure continued advances in genetics and genomics research, especially for clinical applications — and she was completely right. Our research community will remember her commitment to these important social and ethical issues." GINA is among the laws that will be accessible via the website of the NHGRI-funded LawSeqSM project, for which Consortium chair Susan M. Wolf is Co-PI with Ellen Wright Clayton of Vanderbilt and Frances Lawrenz of the University of Minnesota. LawSeqSM is dedicated to building a legal foundation for translating genomics into clinical application; the website will go live in spring, 2018. 

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New Articles from Wolf, Evans on Genomics Research Ethics, Patient Rights

January 23, 2018

Two recently published articles, one written by Consortium Chair Susan M. Wolf and the other by LawSeqSM Working Group member Barbara J. Evans, grapple with important issues in genetic research ethics. The Wolf article, "The Continuing Evolution of Ethical Standards for Genomic Sequencing in Clinical Care: Restoring Patient Choice," outlines the complexities of setting policy to guide the management of incidental or secondary findings. She argues that the leading professional society for medical geneticists in the US, the American College of Medical Genetics and Genomics (ACMG), needs to change their current guideline to reflect empirically-based research on patient preferences regarding informed consent. In her commentary "HIPAA’s Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights," Prof. Evans applies the lens of civil rights law to a patient's right to view their own laboratory test results. Wolf and Evans are two of the most eminent legal scholars working on genomics research ethics; they were among the co-authors of the influential paper "Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between." 

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Whole brain scan

Should Older Judges and Politicians be Evaluated for Dementia?

November 20, 2017

In a talk last week sponsored by Harvard Law School's Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, Prof. Francis Shen, JD, PhD, raised the question of how to grapple with powerful people who show signs of dementia. According to an item from WBUR, a public radio station in Boston, Shen's central point was that "politicians, who have huge advantages as incumbents, and federal judges, who serve for life, tend to stay on the job well past typical retirement ages. Yet we know that some cognitive decline with age is normal, and that the risk of dementia skyrockets as we get older. So it's reasonable to conclude that some judges and politicians are no longer up to their tasks." Shen is a Consortium affilate faculty member who specializes in neurolaw; he's currently a fellow at Petrie-Flom. Ultimately, Shen recommended a middle way, one that doesn't involve mandatory retirement ages for elected officials and judges but also doesn't ignore the social risks of their cognitive decline. Read the entire article here

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Klass Weighs in on Proposed Pipeline Project

October 27, 2017

Plans for a replacement pipeline called Enbridge Line 3 is roiling conversations across Northern Minnesota. According to an article in the Duluth News Tribune, the state's "Public Utilities Commission (PUC) has to weigh the adequacy and reliability of energy supplies, decide which forecasts to trust and — if it is to approve the project — be convinced there's no better alternative." Prof. Alexandra Klass, a Consortium affiliate member, is quoted; she notes, "The position the state is taking is yes, having a new pipeline will be more efficient for Enbridge's business operations, but that's not saying it's needed for the state and citizens of Minnesota." Klass is a professor at the University of Minnesota Law School who specializes in energy and the environment. Earlier this week, protests caused the cancellation of a St. Cloud public hearing on the pipeline; to learn more, click here.

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Francis X. Shen

Video Available for Shen Neurolaw Lecture

October 5, 2017

Prof. Francis Shen, a Consortium affiliate member, recently delivered a lecture entitled "The Neurolaw Revolution" at Harvard Law School. Prof. Shen is currently a Senior Fellow in the Project on Law and Applied Neuroscience, a collaboration between the Center for Law, Brain & Behavior at Massachusetts General Hospital and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard. In his talk, Prof. Shen explored how neuroscientific analysis of law is revolutionizing legal doctrine and practice. He is on the faculty of University of Minnesota Law School, where he directs the Shen Neurolaw Lab. Video of the event is now posted online here.

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Prof. Francis Shen

Prof. Francis X. Shen Named McKnight Presidential Fellow

August 10, 2017

Consortium affiliate faculty member Francis X. Shen, JD, PhD, has been named a 2017-19 McKnight Presidential Fellow. This fellowship program is targeted at the University of Minnesota’s most promising faculty who have been newly granted tenure and promotion to associate professor; it recognizes their scholarly accomplishments and supports their ongoing research and scholarship with supplemental funding for a three-year period. In his research and teaching, Prof. Shen examines the increasingly important intersection of law and the brain sciences. His work is aimed at delineating the principles by which cognitive neuroscience should—and should not—be embraced by courts and legislatures. Shen joined the Law School faculty in 2012, and also serves as executive director of education and outreach for the MacArthur Foundation Research Network on Law and Neuroscience.

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Texas Law Allows Unproven Stem Cell Interventions

June 30, 2017

A Texas bill has been signed into law allowing "clinics and companies. . . to offer people unproven stem cell interventions without the testing and approval required under federal law," according to Science Magazine. The act grants legal status to practices that are already widespread; Leigh Turner, a professor at Consortium member the Center for Bioethics notes, "you could make the argument that — if [the new law] was vigorously enforced — it’s going to put some constraints in place." However, he continues, "it would really be surprising if anybody in Texas is going to wander around the state making sure that businesses are complying with these standards." The law, which takes effect Sept. 1, sanctions a much broader set of therapies than federal rules allow. Read the entire article here

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Underwater research drone

Consortium Scholar Reveals Potential, Pitfalls of New Ocean Research Technology

June 21, 2017

New observational technologies are greatly complicating oceanographic research, even as they present tantalizing opportunities. Because they are less expensive and more networked than ship-based measurements, remotely operated vehicles like undersea drones and satellites can provide an unprecedented amount of data while democratizing the research process. However, these new tools also challenge existing maritime codes such as the United Nations Convention on the Law of the Sea. During the 2015-2016 academic year, Geography, Environment and Society PhD candidate Jessica Lehman was awarded a Consortium Research Grant to explore how these new technologies have become entangled in questions of territory, information-sharing, and politics. Lehman notes, “Concerns about global environmental crises such as climate change push scientists to collect more data and make it freely available online, but nations are concerned that these data may compromise their sovereignty, from military operations to fisheries development. To address these concerns, we can’t make assumptions about relationships between security and new technologies; we have to follow them into the world and see what they are actually doing.” Her Consortium-funded research informed her dissertation, which evaluated the interfaces between geopolitics and international oceanographic science. Lehman is currently an AW Mellon Postdoctoral Fellow in the Center for the Humanities at the University of Wisconsin, Madison; to learn more about her research, click here.  

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LawSeq logo corrected Dec 2016

ELSI Congress Tackles the Big Questions on Genomics and Society

June 9, 2017

Earlier this week, the 4th annual conference of the National Human Genome Research Institute (NHGRI) Ethical, Legal and Social Implications (ELSI) Research Program was held in Farmington, CT. This year's focus was the many ways genomics is rapidly becoming a fixture in our lives, from prenatal genetic screening to the genetic testing of women with family histories of breast cancer. Physicians, geneticists, genetic counselors, social scientists and lawyers from academia, government and industry brought new insight and perspectives to debates over new and emerging data. Consortium Chair Susan M. Wolf, JD, moderated and presented during a session on a new, NHGRI-funded grant entitled "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." The panelists – Gary Marchant (Sandra Day O'Connor College of Law, Arizona State University), Amy McGuire (Baylor College of Medicine, University of Texas), and Ellen Wright Clayton (School of Law, Vanderbilt University) – are all PIs and collaborators on the grant. The speakers identified areas of agreement and disagreement, and suggest pathways to advance law and policy to support the optimal use of genomics. For more information, visit the ELSI Congress website.

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Barbara Evans

Evans Proposes 21st-century Governance Model for Health Data

May 30, 2017

A new article in the American Journal of Law & Medicine by Consortium collaborator Barbara J. Evans, MS, JD, LLM, expands on ideas she shared at last December's forum, "How Patients Are Creating Medicine's Future." "Barbarians at the Gate: Consumer-Driven Health Data Commons and the Transformation of Citizen Science" draws on past citizen science efforts; empirical research such as the Health Data Exploration Project; guidelines like the Common Rule and HIPAA; and property law. Evans argues that laypeople who work together to assemble datasets could serve research and health care needs better than the current system. She notes: "The aim of consumer-driven data commons is to allow consenting groups of individuals to assemble datasets on a meaningful scale, empowering themselves through collective action to exercise greater control over the fate of their data than individuals can achieve acting alone." Evans also discusses the opportunity presented because "new forms of [personal health data (PHD)], such as data from mobile and wearable sensing devices, are generally not regulated by the Common Rule and HIPAA Privacy Rule. This regulatory gap offers an opportunity to design a new PHD privacy and access models on a blank slate, perhaps avoiding pitfalls of existing regulations." A PDF of the article is available here.

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Paul Ryan holding a copy of the American Health Care Act

What Americans Will Really Dislike About 'Trumpcare'

May 8, 2017

An article in the Washington Post co-authored by University of Minnesota health policy professor Sarah Gollust analyzes the bill that passed the US House of Representatives last week. Gollust and her co-researchers conducted a national survey in March asking 1,588 Americans what they knew about the Affordable Care Act (ACA, also known as Obamacare) and the proposed American Health Care Act (AHCA, also known as Trumpcare), whether their views of these programs were favorable or unfavorable, and how completely they understood each. The results? Among those surveyed, even those who were aware of the ACA requirement to purchase insurance or pay a penalty prefer the ACA to the AHCA. Of particular concern regarding the AHCA was its penalty for enrollment gaps, fines that would be paid to insurers. The authors conclude the enrollment gap could be used as an additional line of attack by anti-AHCA activists, noting "the public is already concerned about protections for people with preexisting conditions, huge cuts to the Medicaid program, and citizens losing insurance. Highlighting the AHCA’s coverage-gap penalty could drop public support further."

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Video Available for Lecture on the Past, Present, and Future of the Affordable Care Act

March 27, 2017

Given the drama of the past several weeks, during which Congress wrestled with repealing, replacing or reforming the Affordable Care Act (ACA), it's an opportune time to look at the trajectory of that legislation. On March 23, the seventh anniversary of the ACA's signing, the former General Counsel for the US Department of Health and Human Services (HHS), William B. Schultz, lectured at Harvard Law School in an event sponsored by the Petrie-Flom Center. He described what he saw from his front-row seat during five years at HHS, during which time the repeal of ACA was the number one priority of the Republicans in Washington, and it was deeply unpopular across the nation. Mr. Schultz also considered what's likely to happen now that the Republicans have control of all branches of government and the repeal agenda is complicated by the new support for the law by voters and some Republican governors. He concluded with a discussion of health policy options for the future. A video of the lecture and discussion can be viewed here

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Seal of University of Minnesota law school

Consortium Research Assistants Selected for Minnesota Law Review

February 13, 2017

Both of the legal project assistants (LPAs) currently working with Consortium chair Susan M. Wolf, JD, have received staff appointments for volume 102 of the Minnesota Law Review, an honor indicating high achievement in legal studies. Caroline Bressman was selected as Symposium Articles Editor, and Lauren Clatch is Lead Articles Editor. Ms. Bressman is a graduate of St. Olaf College who clerked at Nichols Kaster last summer. Ms. Clatch graduated from Washington University in St. Louis and interned for Chief Judge John R. Tunheim at the U.S. District Court in Minneapolis last summer. Both are assisting Prof. Wolf with research related to the LawSeq grant. Congratulations to these law students on this well-deserved honor! 

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The Ethics of Football: NFL Player Health Policies Examined

February 1, 2017

Just in time for next Sunday's Superbowl game, a new paper published in the University of Pennsylvania Law Review explores the legal and ethical aspects of a hypothetical National Football League (NFL) player's health. The authors, who include Consortium collaborator I. Glenn Cohen of Harvard Law School, ask "What are the current legal standards for employers collecting and acting on an individual’s health- and performance-related information?" They draw upon disability law, privacy law and other disciplines to provide recommendations to better protect the health and privacy of professional football players. The authors find that "it appears that some of the existing evaluations of players, both at the NFL Scouting Combine (Combine) and once drafted and playing for a club, seem to violate existing federal employment discrimination laws." To correct this, they recommend both adherence to current laws and changes to existing statutory schemes. Read the entire article here

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Pill bottle with one capsule left

Drugmakers Use Legislative Strategies to Weaken Opioid Regulation

September 21, 2016

A new, in-depth investigation by the Center for Public Integrity and the Associated Press details the methods by which pharmaceutical companies and their allies weaken and defeat restrictions on opioid access. According to the article, "Deaths linked to addictive drugs like OxyContin, Vicodin and Percocet had increased more than fourfold since 1999, accounting for more fatal overdoses in 2012 than heroin and cocaine combined." Part one of the two-article series describes "a statehouse playbook of delay and defend that includes funding advocacy groups that use the veneer of independence to fight limits on the drugs," a strategy executed by "an annual average of 1,350 lobbyists in legislative hubs from 2006 through 2015." Part two focuses on similar efforts at the federal level, outlining how drug lobbies "reinforced their influence with more than $140 million doled out to political campaigns. That combined spending on lobbying and campaigns amounts to more than 200 times the $4 million spent during the same period by the handful of groups that work for restrictions on painkillers. Meanwhile, opioid sales reached $9.6 billion last year." The spike in opioid deaths has led President Obama to declare Sept. 18-24 Prescription Opioid and Heroin Epidemic Awareness Week and request $1.1 billion in new funding for treatment programs. 

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