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Prof Susan M. WOlf

Prof. Wolf Weighs In On New Alzheimer's Research

April 18, 2018

Consortium chair Susan M. Wolf  and Dr. Ronald Petersen (Mayo Clinic) were interviewed yesterday about the practical, ethical and legal implications of new tools for early diagnosis of Alzheimer's disease. The interview was conducted by Kerri Miller of MPR News, and focuses on Dr. Petersen's recently published research, with Prof. Wolf weighing in on the nuances of translating it to clinical practice. Phone calls from people already diagnosed with Alzheimer's and those who have a family history of the disease illuminate the challenges of grappling with this heartbreaking illness. Listen to the entire interview here.

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Stay Updated on Consortium Resources and Activities!

February 2, 2018

Every year, the Consortium sponsors leading national programs, undertakes cross-disciplinary research and provides grants to support scholarship on the societal implications of the life sciences. We also connect our 19 member centers and affiliate faculty with national and international collaborators to create a vibrant community of thinkers and policymakers. To stay up to date on our offerings and news, sign up for our email list. And don't forget to follow us on Facebook and Twitter!  

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Jeffrey Kahn

Are Bioethicists Keeping Pace with Rapid Changes in Gene Editing?

January 17, 2018

Jeffrey Kahn, Director of the Berman Institute of Bioethics at Johns Hopkins University, joined Minnesota Public Radio host Kerri Miller today to discuss innovations in gene editing and the consequences that must be considered as it moves into clinical application. New tools like CRISPR are much more targeted than past gene therapies; molecular biology now allows the precoding of both the material and the location affected by genetic change. This raises thorny ethical questions: could these techniques go beyond curing diseases to creating genetic enhancements that could make someone stronger or faster? Could gene editing be used to advance eugenics, by making it possible to change someone's skin color? Will the benefits be widely available, or only help the wealthy and powerful? What does it mean to disabled if we have the ability to wipe out conditions like Down syndrome? Rapid advancements in gene therapy and the development of technologies that are more powerful than originally expected means carefully considered policy and clinical approaches must be put in place. Listen to the whole conversation here. Before joining Johns Hopkins, Prof. Kahn was Director of the Center for Bioethics at University of Minnesota. 

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Man's bare chest with Do Not Resuscitate tattooed on it

Unconscious Man with DNR Tattoo Presents Ethical, Legal Challenges

December 4, 2017

An article in the New England Journal of Medicine describes the case of a man  unconscious, in deteriorating health, and without identification or family  who was admitted to a Miami emergency room. Upon examination, doctors found a large tattoo that said DO NOT RESUSCITATE (DNR) on his upper chest. The ER doctors were initially inclined to disregard the DNR, "invoking the principle of not choosing an irreversible path when faced with uncertainty." However, an ethics consultant advocated that the patient's wishes, expressed through his tattoo, be honored. The patient died the next day. Hastings Center Scholar Nancy Berlinger opines, "[It] might have been the most reliable way to make his voice heard. It was right to take it seriously." She is co-author (with Consortium chair Susan M. Wolf and Bruce Jennings of the Center for Humans and Nature) of the definitive Guidelines on the Termination of Life-Sustaining Treatment and the Care of the DyingIn the Washington Post, bioethicist Arthur Caplan discusses the legal implications of the case, noting "there are no legal penalties for ignoring a tattoo that instructs medical personnel not to resuscitate." He goes on to say, “'A tattoo, I think, is best seen as a way to alert medical staff to your wishes or trigger an inquiry to family and friends and partners'. . . adding that patients should keep the actual [advance health-care directive] in a pocket or wallet."

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Steven Miles

Miles Wins ASBH Lifetime Achievement Award

November 1, 2017

Steven H. Miles, MD, has been recognized by the American Society for Bioethics and Humanities (ASBH) for his contributions to the field. Miles is Professor Emeritus at the Center for Bioethics, a Consortium member, and is best known for his work to hold people who perform and enable torture to account. As he noted in his award address, "In the United States, there are as many torture survivors as persons with Parkinson’s disease. . . . Where are the clinics and researchers to serve the needs of these people? Where are the ethicists and ethics committees speaking against the castes that make such suffering invisible to our academic health centers and health care system?" Miles is the author of Oath Betrayed: Torture, Medical Complicity, and the War on Terror and Doctors Who Torture, among other books and articles. 

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Medical tech carrying cooler

Susan Wolf on the Ethics of GTEx

October 13, 2017

Nature News and Comment​ has just published an article about an National Institutes of Health (NIH)​-funded study on gene expression that's intended to create "a 'Google Maps' of the body, according to Kristin Ardlie of the Broad Institute of MIT and Harvard​. The study, known as GTEx, is collecting data from the tissues of deceased donors and has the goal of plugging "a gap in the search for the genetic origins of disease." Laura Siminoff, a bioethicist at Temple University​, has studied whether the families of donors truly understood the possible implications of participating in the study, and suggested that "some form of genetic counseling should be made part of the informed consent process for similar projects." Regarding the lack of a plan to return GTEx results to families, Consortium Chair Susan M. Wolf noted in the article, “'A standing policy of simply "we will not return results" is becoming less and less common.' She noted that studies such as GTEx should plan to enable families to be identified if researchers discover, for instance, a mutation that dramatically increases the risk of cancer for relatives who inherit it."

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Cells edited using CRISPR

Study is First to Use CRISPR to Repair an Embryonic Mutation

August 2, 2017

The New York Times and other news outlets are reporting a major milestone in genetic engineering: the successful editing of genes in human embryos to repair a "common and serious disease-causing mutation." A new study published in Nature describes the research performed by a team led by biologist Shoukhrat Mitalipov of Oregon Health & Science University. Since the discovery of the CRISPR gene-editing method, scientists and ethicists have been discussing the opportunities and challenges presented by the procedure. Robin Lovell-Badge, a professor of genetics at the The Francis Crick Institute in London noted “You could certainly help families who have been blighted by a horrible genetic disease.” On the other hand, Consortium collaborator Henry Greely of the Center for Law and the Biosciences at Stanford University notes ethical concerns related to "so-called germline engineering, which refers to changes made to embryo that are inheritable. 'If you’re in one camp, it’s a horror to be avoided, and if you’re in the other camp, it’s desirable,' Dr. Greely said. 'That’s going to continue to be the fight, whether it’s a feature or a bug.'" Read the entire article here

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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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Newborn Adam Nash and older sister Molly

Child Conceived as Sister's Stem Cell Donor is Now a Teen

June 26, 2017

Adam Nash was conceived using in vitro fertilization so doctors could collect stem cells from his umbilical cord blood to save his sister Molly's life. Molly suffers from Fanconi anemia; according to her mother, Lisa Nash, who was quoted in the Minneapolis Star Tribune"Molly was dying. She was in bone-marrow failure and she had pre-leukemia. We basically used Adam’s garbage to save Molly’s life," because cord blood is discarded after birth. Adam's birth in 2000 sparked widespread discussion of the ethical dilemmas raised by genetic engineering, and was among the inspirations for the book and movie My Sister's Keeper. The treatment, which was successful, was suggested by Dr. John Wagner of Consortium member the Stem Cell Institute. Dr. Wagner is an internationally-recognized as an expert in the field of stem cells and umbilical cord blood transplantation. He was the first to use umbilical cord blood to treat a child with leukemia in 1990; since then, more than 1,300 umbilical cord blood transplants have been performed at the University of Minnesota. A related article with more background on the Nash case is available here

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Logo for Dept. of Health and Human Services

Final Version of Common Rule Announced

January 18, 2017

The long-awaited updated version of the Common Rule – the regulations safeguarding individuals who participate in research – was announced today by the US Department of Health and Human Services. The goal of the revision is to strengthen protections of research participants without adding undue administrative burdens for researchers, particularly in low-risk studies. The Common Rule revisions will inform the expert presentations at the Consortium's research ethics events on March 8-9, consisting of a national conference, "The Future of Informed Consent in Research and Translational Medicine" on March 8 and the University of Minnesota's "Annual Research Ethics Day" on March 9. These events will be webcast; for more information and to register, visit the Consortium's events page. The Annual Research Ethics Day on March 9 will conclude with in-person workshops and trainings on practical research topics. To learn more, visit z.umn.edu/researchtr

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Republican and democratic symbols -- donkey and elephant

New Study Shows How Doctors' Politics May Influence Patient Care

October 11, 2016

Recent research looked at how patient care may be affected by a doctor's political leanings, at least regarding some controversial issues like abortion or firearm safety. An article from the Associated Press explains the methodology of the study, in which Yale University researchers surveyed voter registration records of 20,000 primary care physicians to link them to their party affiliation. The study's authors then surveyed 200 of those doctors about how they'd react to health issues that might come up during a routine physical. Bioethicist Nancy Berlinger of the nonpartisan Hastings Center, who wasn't part of the study, said "this was really an eye-opener," noting these results shed light on implicit bias; when it comes to deeply partisan divides, doctors "can't screen that out just like the rest of us can't screen it out."

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Doctor in patient's room with clipboard

Public Invited to Weigh in on Toughest Medical Ethics Decisions

August 24, 2016

In the aftermath of Hurricane Katrina, health care providers at Memorial Medical Center in New Orleans faced a grim choice: in the midst of a crisis, who among their patients should be evacuated to better conditions? For many in the general public, news coverage (and later a book) about what happened at Memorial was the first time they truly became aware of medical rationing. The first article in a new collaboration between the New York Times and Radio Lab, "Playing God," describes an unusual public debate on the subject being led by Dr. Lee Daugherty Biddison and her colleagues at Johns Hopkins Hospital. Dr. Daugherty Biddison is leading a task force that will "make recommendations for [Maryland] state officials that could serve as a national model." She and her team are holding a series of public forums to hear opinions from laypeople on topics like: should a doctor be able to remove one person from a ventilator to give it to another with a better chance of surviving? During cancer drug shortages, how should doctors choose which patients receive them? Should such decisions be randomized, through a lottery, or based on a patient's age or likelihood of survival? Renowned bioethicist Ruth Faden of Johns Hopkins Berman Institute of Bioethics praised the effort, noting “It’s a novel and important attempt to turn extremely complicated core ethical considerations into something people can make sense of and struggle with in ordinary language.”

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Donald Trump

The Ethics of Diagnosing Trump from Afar

August 16, 2016

The current election cycle is raising challenging questions about the role of psychiatric diagnosis in public debate, one reminiscent of arguments during the 1964 candidacy of Barry Goldwater. According to the New York Times, "In the midst of a deeply divisive presidential campaign, more than 1,000 psychiatrists declared the Republican candidate unfit for the office, citing severe personality defects, including paranoia, a grandiose manner and a Godlike self-image. . . . After losing in a landslide, the candidate sued the publisher of Fact magazine, which had published the survey, winning $75,000 in damages. But doctors attacked the survey, too, for its unsupported clinical language and obvious partisanship." In 1973, the American Psychiatric Association adopted what is commonly known as the Goldwater Rule, which "prohibits psychiatrists from offering opinions on someone they have not personally evaluated." However, some mental health workers feel Donald Trump and his ideology are so dangerous they're ethically required to speak out, pointing out the aspects of his behavior they find concerning: racism, manipulation, narcissism, hypermasculinity and an inability to deal appropriately with anger. Despite the Goldwater Rule, a manifesto written by University of Minnesota psychology professor William Doherty has been signed by 2,200 mental health professionals; Prof. Doherty says he believes the current election is exceptional, noting "What we have here is a threat to democracy itself." Read the complete article here

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Gender card from Nagano winter olympics confirming an athlete is female.

Rio Olympics Raise New Questions About Sex-testing Athletes

August 4, 2016

Controversies about athletes' gender have been part of the Olympic Games since the "Nazi Olympics" in Munich, 1936. That's the year two runners, Stella Walsh of Poland and Helen Stephens of the United States, were rumored to be men because of their "remarkable athleticism, 'male-like' muscles and angular faces," according to the New York Times Magazine. 80 years later, our culture seems to be more aware of the complex nature of gender expression, but woman athletes are still subjected to testing to insure they're sufficiently female. Concerns abound that high levels of testosterone can provide an unfair advantage for women competing against other women. In the current Rio Olympics two runners, Caster Semenya of South Africa and Dutee Chand of India, have been required to undergo "gender verification" and have been subject to unwanted, intrusive media attention as a result. A new article in JAMA reviews the history of gender determination in Olympic sport and discusses the science behind what are termed "disorders of sex development," which can lead to intersex people being raised as a gender that doesn't necessarily match their chromosomes. For this year's games, rules around gender verification have been suspended, so Semenya and Chand will be able to compete.