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Ethical, Legal and Social Implications of Learning Health Systems Symposium

Fri, November 18, 2016, 8:30am to 3:30pm
Location: 
Taubman Biomedical Science Research Building (BSRB) 109 Zina Pitcher Place

This symposium will promote dialogue and contribute to a research agenda on how learning health system organizers should engage the ethical, legal and social implications of this work.

The next generation of health information technology organizes data into large, networked systems to address challenges of U.S. health systems: spiraling costs, poor health outcomes, safety issues, unproductive research enterprises, and failure to implement known clinical best practices. More than simply “Big Data,” these systems are arranged as “learning health systems,” multi-stakeholder federations that gather and analyze data to create useful knowledge that is disseminated to all stakeholders. Harnessing the power of health data for learning strains ethical, legal, and social paradigms for how health information should be collected, stored, accessed, used, and destroyed.

CBSSM is a co-sponsor, along with the Brehm Center, the Michigan Institute for Clinical and Health Research (MICHR), the School of Public Health, and Healthcare Information and Management Systems Society (HIMSS).

EVENT REGISTRATION

CBSSM Seminar: Michele Gornick, PhD

Thu, January 15, 2015, 3:00pm to 4:00pm
Location: 
NCRC 16-266C

Michele Gornick, PhD

VA HSRD Fellow & CBSSM Research Investigator

Title: The public’s preferences for the return of secondary findings identified through genome sequencing: Information and deliberation make a difference

Summary: Genomic sequencing is becoming a part of clinical practice. Existing studies are limited and conclude that people would like unrestricted access to all of their genetic information. However, we do not know the extent to which respondents in these studies took into account the complex scientific and ethical issues that attend genome sequencing. In order to address this gap, we organized a deliberative democracy (DD) session to educate members of the public on genome sequencing, to engage them in dialogue about the benefits and risks of the clinical implementation of this technology, and to elicit their informed perspectives about policies governing the return of secondary findings.

A commentary by Reshma Jagsi, "From Muslim Registries to Radical Health Care Reform—Caring for Patients in an Era of Political Anxiety" was recently published in JAMA Oncology. Click here for full commentary.

Check out the Ethics Path available to Michigan medical students through the Paths of Excellence (PoE) program. The ethics path provides opportunities for individualized, independent study, combined with field work with CBSSM, and a capstone project in the M4 year.

Click here for more information about the PoE program.

Research Topics: 

PIHCD- Martha Dabis & Ray De Vries

Wed, April 26, 2017, 4:00pm
Location: 
NCRC bldg 16 B004E

Discussion: Initial Inquiry into testing "Workings of the Human Spirit" theory (by the Chaplaincy Research Consortium) - chaplaincy research in clinical settings, outpatient cancer care, using UCSF methodology "Spiritual Assessment and Intervention Model".

Thu, May 04, 2017

Cancer Therapy Advisor asked Scott Roberts about the PGen Study and the implications for Direct-to-Consumer cancer risk testing in the future. Check out the Q&A session in the link below.

Naomi Laventhal was appointed to the American Academy of Pediatrics (AAP) Committee on Bioethics. She also serves as the liason to the Executive Committee of the AAP Section on Bioethics (which is the educational/outreach arm) and edits the “ethics case of the month” listserv for AAP.

Wendy Uhlmann, Scott Roberts, and Ray De Vries will serve as panelists on Monday, September 11th for FINDING COMMON GROUND: A Conversation on Genetics and Religion at the Ann Arbor Downtown Library.

More information can be found here.

Research Topics: 

Sarah Hawley's perspective piece, "Half of women with early-stage breast cancer consider prophylactic double mastectomy" was recently published in Healio ITJ (in the journals).

Full article can be found here.

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