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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

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.

Geoff Barnes wrote a recent perspective piece and was featured in a UM Health Lab blog about anticoagulation clinic and assisting patients and providers with decision making.

Research Topics: 

PIHCD: Jacob Solomon

Wed, March 09, 2016, 2:00pm
Location: 
B004E NCRC Building 16

Jacob Solomon will be brainstorming about several ideas to study how users' ability to control decision aids affects their decision making.

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

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

Funded by NIH - National Institute Of Nursing Research

The project aims are 1) To develop a tailored web-based decision support intervention to prepare stroke surrogates to make decisions on use of life sustaining treatments; and 2) To pilot test the tailored decision support intervention in surrogate decision makers of hospitalized stroke patients. Key features of the tool will include an advanced statistical prognostic calculator that presents customized outcome data in a tailored and accessible fashion; an exercise to assist the surrogate in clarifying values most important to the patient, and questions to ask the health care team to empower surrogates to communicate more effectively. Information obtained in this R21 is critically important to the development of a novel tool that can be tested in a future definitive R01 study in order to better match treatment plans to patient wishes, reduce adverse outcomes among surrogates, and limit unwanted variability in end-of life treatment.

PI: Darin Zahuranec, MD

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.

Brian J. Zikmund-Fisher, PhD

Associate Director

Brian J. Zikmund-Fisher is an Associate Professor in the Department of Health Behavior and Health Education, University of Michigan School of Public Health, as well as a Research Associate Professor in the Division of General Internal Medicine, University of Michigan Medical School. He has been part of CBSSM and its precursors at U-M since 2002 and acts as CBSSM Associate Director.

Last Name: 
Zikmund-Fisher
Press Coverage: 

Patients’ Attitudes toward Considering Cost When Making Medical Decisions (Oct-13)

Imagine that for the last three months, you have had a very bad headache – the worst in your life – that won’t go away, even when you take aspirin. In addition to the headache you have also been feeling dizzy. Your doctor tells you that you need to get a brain scan to test whether the headache is being caused by something serious. There are two possible scans you can get: a Magnetic Resonance Imaging (MRI) or a Computerized Axial Tomography (CT) scan.  The MRI provides a slightly more detailed picture and might find something that the CT misses, such as an extremely uncommon blood vessel problem, but nearly all problems serious enough to need treatment would be seen on either the MRI or the CT.

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