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Fri, September 07, 2018

The almost 5 million people who paid to get their DNA analyzed by the company 23andMe recently found out that their genetic data and related health information might have been sold to a major drug company. That's because 23andMe made a $300 million deal with pharmaceutical giant Glaxo SmithKline, to let it tap that genetic goldmine to help it develop new medicines. If 23andMe customers consented to allow their DNA samples to be used for research when they sent them in, their data can be sold in this way. Millions more people have samples sitting in very different kinds of biobanks: at universities and major teaching hospitals. When patients have surgery, biopsies, or blood draws at hospitals, those specimens may be kept for future research.

A new University of Michigan survey documents public attitudes toward potential commercial use of these samples. The survey reveals what members of the public think about such deals, and what they would want to know if their specimen were part of one, even if it didn't have their name attached. The results are published in a new paper in the August issue of the journal Health Affairs, by a team of U-M bioethics researchers from the Medical School and School of Public Health. Only one in four of the 886 people surveyed nationally said they'd be comfortable with companies getting access to their leftover specimens from a university or hospital biobank.

Kayte Spector-Bagdady, Raymond De Vries, Michele Gornick, Andrew Shuman, Sharon KArdia, and Jodyn Platt are authors on the study.

Research Topics: 

ELSI-LHS Symposium

Wed, November 15, 2017, 8:00am to 4:00pm
Location: 
Palmer Commons, 100 Washtenaw Ave

Join us for our 2nd annual symposium and workshop on the ethical, legal and social implications of learning health systems (ELSI-LHS).


This year's focus will be on data and knowledge sharing.


NOV 15 - 8:00 am - 4:00 pm: The symposium will lay out the ELSI of data sharing and translation in learning health systems that strive to be both FAIR (findable, accessible, interoperable, and reusable) and fair. The day will interactively address critical issues on data and knowledge sharing.


Speakers include John Wilbanks, Elizabeth Pike, Kenneth Goodman, Debra Mathews, Peter Embi, Peter Singleton, Warren Kibbe, Joon-Ho Yu and more to come!


Proceeds will be synthesized into draft recommendations for data and translation to practice & streamline future ELSI-LHS research.


We have issued a Call for Poster Abstracts to be included in the 2nd annual symposium. Poster displays should relate to the conference theme, "Data and Knowledge Sharing," and may relate to either ELSI or technical aspects of learning health systems. Abstracts and posters should be developed for an interdisciplinary audience including social scientists, informaticians, health care providers, and community members.


To submit an abstract, please go to: 2017 ELSI Abstract Submission
#elsilhs

CBSSM is a co-sponsor of this event.

Alan R. Tait, PhD

Faculty

Dr. Tait is the Department of Anesthesiology Endowed Professor of Clinical Research. Dr. Tait is a former long-standing member of the Institutional Review Board and a current member of the Medical School Admissions Executive Committee. In addition, Dr. Tait is the Chair of the Research Committee for the Society for Pediatric Anesthesia.

Last Name: 
Tait
Thu, February 11, 2016

Raymond De Vries, PhD and Scott Kim, MD, PhD 's study of euthanasia and assisted suicide (EAS) for persons with psychiatric illnesses was recently written up in the New York Times. They found that persons receiving EAS for psychiatric disorders in the Netherlands were mostly women, of diverse ages, with complex and chronic psychiatric, medical, and psychosocial histories. They also reported that in more than half of approved cases, people had declined treatment that could have helped, and that many cited loneliness as an important reason for wanting to die. Dr. De Vries and Dr. Kim are current and former co-directors of the Center for Bioethics and Social Sciences in Medicine (CBSSM) .


Citation: Kim SYH, DeVries RG, Peteet JR. Euthanasia and Assisted Suicide of Patients With Psychiatric Disorders in the Netherlands 2011 to 2014. JAMA Psychiatry. 2016.

 

Fri, October 30, 2015

Brian Zikmund-Fisher was quoted by a number of news outlets on the relaunch of 23andme.

In an interview for the LA Time article regarding the relaunch, “Genetic testing evolves, along with health and ethics debates,” Brian Zikmund-Fisher disagrees that more information is always good.  Dr. Zikmund-Fisher points out, "Providing people with more information is not helpful if they can't do anything about it, or it leads them to focus on the wrong thing" — on their genes rather than their lifestyles, for example.”

Holly Witteman, formerly a post doctoral fellow at CBSSM and currently an assistant professor in the Faculty of Medicine at Université Laval, and colleagues’ 2016 article “One-Sided Social Media Comments Influenced Opinions And Intentions About Home Birth: An Experimental Study” was featured on Eurekalert!  an online, global news service operated by AAAS, the American Association for the Advancement of Science. The article was published in the April edition of Health Affairs and the co-authors are Angela Fagerlin, Nicole Exe, Marie-Eve Trottier and Brian Zikmund-Fisher.

An online experiment revealed that one-sided comments after health articles could influence people’s opinion about the health topic. It raises questions about how to ensure health related comment sections remain balanced.

EurekAlert!

Research Topics: 

Bioethics Grand Rounds -Scott Grant MD, MBE

Wed, May 24, 2017, 12:00pm
Location: 
UH Ford Auditorium

Scott Grant, MD, MBE, University of Chicago: "Dealing with complications and poor outcomes and surgical futility"

Scott Grant, MD, MBE, University of Chicago

Abstract: Surgical complications are ubiquitous and effect all surgeons. This talk will review how surgical ethics is distinct from traditional medical ethics in that surgeons have a greater and more direct responsibility for the outcomes of their patients than medical doctors. It will review how surgery harms before healing and the importance of weighing risks and benefits in decision making. Ways of assessing perioperative risk and preventing complications will be reviewed. Strategies for coping with complications will be described. Human error theory and the "Swiss cheese" model of human error will briefly be discussed. The SPIKES protocol for breaking bad news will be reviewed. Different definitions of futility will be described. Various procedural approaches to futility disputes will be analyzed. The best tool in approaching challenging "futility" situations will be described - open and honest communication between the patient or surrogate and the physician.

Andrew R. Barnosky, DO, MPH

Faculty

Dr. Andrew R. Barnosky is an Associate Professor in the Department of Emergency Medicine and the former Chair of the Adult Ethics Committee for the University of Michigan Hospitals and Health Centers. In the College of Literature, Sciences, and the Arts, he is the director of the Health Sciences Scholars Program for undergraduate students. He is a graduate of the A. T. Still University of Health Sciences - College of Osteopathic Medicine (Missouri), and holds a master's degree (MPH) in public health and health policy from the Harvard School of Public Health.

Research Interests: 
Last Name: 
Barnosky
Wed, April 24, 2013

Angela Fagerlin is cited in a recent Reuters Health article: “Discuss cancer-reducing drugs with women – panel."

"For a woman who starts out with a one in 40 chance of developing cancer, she told Reuters Health, "Your risk goes from 2.5 to 1.25 (percent). It's a 1 percent difference in your risk of breast cancer, having to take a drug every day for five years that has some side effects."

But for some women who have a much higher short-term risk of breast cancer - as high as 16 percent - the drugs are more likely to be worth potential side effects, said Fagerlin, who wasn't involved in the new review or the Task Force decision.

Research Topics: 

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