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Ken Langa was recently named to an Institute of Medicine committee that will examine the evidence on preventive factors and/or interventions associated with decreasing the risk of developing Alzheimer's-Type Dementia, amnestic mild cognitive impairment, and age-related cognitive impairment (i.e., primary prevention) and make recommendations to inform public health strategies and messaging and recommendations for future research.

Funded by the NIH

PROJECT SUMMARY Differences (or Disorders) of Sex Development (DSD) is a superordinate term encompassing congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. Adopting an inclusive definition, between 1 in 200 to 1,000 people are born with some degree of atypical sex development. Clinical management of DSD is in a state of flux with disagreements within and between professional, advocacy, and patient communities regarding optimal care. Advances in molecular diagnosis and surgical techniques, findings regarding psychological outcomes in affected persons, and patient advocacy group engagement, led to a consensus conference attended by international experts in the DSD field and patient advocacy. Consensus recommendations included changes to diagnostic and clinical management strategies and in nomenclature that eliminated terms considered confusing and stigmatizing; e.g., “intersex,” “hermaphroditism,” “pseudohermaphroditism,” and “sex reversal.” While scientific and medical communities rapidly adopted the new nomenclature, vocal patient community elements strongly opposed the word “disorder” - experiencing it as unnecessary pathologization of atypical bodies that contributes to the perceived need for potentially harmful surgical “normalization” procedures. Some affected adults now prefer the term “intersex” - referring to an identity, rather than a medical condition. Further, little agreement exists across provider, advocacy, and patient communities regarding what constitutes optimal care for patients and families. Clinical management topics triggering contentious debate include decision- making over gender of rearing, genital surgery and its timing, gonad removal, and disclosing diagnostic details to patients. Evidence of these controversies exists in medical literature, social media, and courts of law, yet a remarkable lack of discussion, much less consensus, exists on how stakeholders value various outcomes. There has yet to be a study designed to systematically examine how patients, parents, healthcare providers, and other stakeholders differentially define and value optimal DSD health care delivery. The proposed study has the following aims: (1) Assess the importance ascribed by stakeholders to DSD clinical management options (i.e., identify what constitutes a “successful outcome”), both immediately and in the future; (2) Identify differential trade-off preferences (e.g., trade-offs between genital appearance, preserving fertility, sexual function, privacy, patient autonomy) and choice processes made by different stakeholder groups; (3) Design and pilot evidence-based curricula for stakeholders that clarify priorities, and integrate these with evidence to facilitate informed and shared decision-making. The proposed approach to understanding differential valuation of clinical management elements and developing data-driven curricula is potentially generalizable to other congenital or chronic conditions involving multidisciplinary care in which treatments are elective and dependent on patient/family values and preferences.

PI: David Sandberg

Michael Fetters has been named a 2016 Fulbright Distinguished Chair in Social Sciences. He will spend five months in Beijing teaching and leading a joint research project with colleagues at Peking University Health Science Center (PUHSC), U-M's partner school in the Joint Institute for Translational and Clinical Research.

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Bioethics Grand Rounds

Wed, September 28, 2016, 12:00pm
Location: 
UH Ford Amphitheater & Lobby

Carl Schneider, JD -- “Can Informed-Consent Laws Work? Evaluating Compelled Disclosure as a Method of Regulation”

Abstract: The law of informed consent is an example of a form of legal regulation called mandated disclosure.  In such regulation, one party to a transaction is required to give the other party to the transaction information to use in making decisions about the parties’ relationship.  There are hundreds of examples of such legal rules besides medical informed consent. This talk asks how well these rules have worked outside medicine. It concludes that there is little evidence that those rules ever work, explores some of the reasons for this surprising failure, and asks what the failure of mandated disclosure outside medicine tells us about the success of informed-consent laws in medicine.

Andrew Shuman delivered the inaugural C.T. Lee Endowed Lectureship on Humanistic Compassionate Care to the Department of Surgery of Yale University.

The article, "The DECISIONS Study: A Nationwide Survey of United States Adults Regarding 9 Common Medical Decisions," authored by Brian Zikmund-Fisher et al. in Medical Decision Making (September-October 2010) was recently identified as the most downloaded article in the journal of all articles published in 2009 and 2010. 

CBSSM Seminar: Jason Rose, PhD (Toledo)

Wed, March 09, 2016, 3:00pm to 4:00pm
Location: 
NCRC, Building 16, Room 266C

Jason Rose, PhD
Associate Professor
University of Toledo

Title: “Decisions, Decisions: The Impact of Treatment Choice on Health-Related Outcomes”

Abstract: From selecting a health care provider to choosing among an array of over-the-counter treatment options, choice has become a ubiquitous element of health care. Using an experimental, lab-based approach, the current research examines how, why, and when treatment choice impacts health-related outcomes (e.g., pain, discomfort).

 

Beth A. Tarini, MS, MD

Alumni

Beth A. Tarini is an Associate Professor of Pediatrics & Division Director of General Pediatrics and Adolescent Medicine at the University of Iowa. Before that, she was an Assistant Professor in the UM Department of Pediatrics and Communicable Diseases. She received her MD from Albert Einstein College of Medicine (2001) and a master's degree from the University of Washington (2006), where she was a Robert Wood Johnson Clinical Scholar. In addition to her clinical interest in preventative care, she pursues an active research program on issues of newborn screening and genetic testing.

Last Name: 
Tarini

Press Kit

About CBSSM

CBSSM acts at the premier intellectual gathering place of clinicians, social scientists, bioethicists, and all others interested in improving individual and societal health through scholarship and service.

Schedule an Interview

Members of the media interested in interviewing Center members can call the UMHS Public Relations office at 734-764-2220 between the hours 8 a.m. and 5 p.m. Eastern Time, or email us directly at cbssm-mgr@umich.edu

PIHCD:Melissa Cousino-Hood

Wed, November 30, 2016, 4:00pm
Location: 
B003E NCRC Building 16

Melissa will speak about an internal grant to better understand provider practices, specific to involving pediatric patients in end of life planning, prognostication and involvement in difficult medical decision-making.

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