Advance care planning supports patient-centered decision-making by discussing goals, values, and preferences for future medical care. This process involves three key stakeholders: the patient, their surrogate decision-maker, and their clinicians. How do the stakeholder roles change when the patient is an adolescent who has the capacity but not the legal right to make medical decisions? Dr. Jennifer Needle, a Pediatric Intensive Care physician from the University of Minnesota Masonic Children's Hospital and faculty member in the Center for Bioethics, will address this question from the perspectives of these stakeholders in the context of adolescent advance care planning. She will review the literature on the benefits and barriers to effective advance care planning, discuss clinician, patient, and surrogate perspectives on medical decision-making in adolescent patients, and discuss future areas of research to support adolescent patients and their families in making informed medical decisions.
Speaker: Jennifer Needle, MD, MPH | Assistant Professor, Center for Bioethics, University of Minnesota
This event was co-sponsored by the Department of Pediatrics in the University of Minnesota's Medical School. No reservation required. Questions? Contact the coordinator at: firstname.lastname@example.org
Dr. Benya discussed the recent National Academies report that examines the effect of sexual harassment on women in scientific, technical, and medical fields in academia. Dr. Benya shared strategies and practices that can be used to prevent and address this discriminatory behavior, and discussed the research that supports these approaches.
Informed consent requires that research participants understand the study under consideration and appreciate its implications for their interests. Therapeutic misconception – which occurs when individuals confuse the purposes of clinical research with standard clinical care – compromises informed consent. Clinical Pediatrics Fellow Dr. Bryan A. Sisk of Washington University expands the discussions beyond therapeutic misconception in clinical trials by explaining multiple ways in which understanding and appreciation of information about a clinical trial can be undermined. He offers a framework of therapeutic misperceptions to assist researchers in managing challenges to the informed consent process. By the end of this talk, attendees will be able to do the following:
1. Identify two components of decisional capacity
2. Discuss challenges of therapeutic misperceptions in the clinic-research setting
3. Explore a framework of therapeutic misperceptions
This activity was designed for physicians and other healthcare professionals.
Speaker: Andrew Jameton, PhD
Affiliate Faculty, Center for Bioethics, UMN; Professor Emeritus, College of Public Health University of Nebraska Medical Center
The background to justice in bioethics revolves around fair access to costly health care resources. Meanwhile, social movements emphasize economic, racial, and identity inequalities within the United States. The demands of climate change add conceptions of justice: environmental justice, intra-specific justice, global inequality, differential responsibility for climate change, and generational justice. How are we to sort out these different emphases? Meanwhile, the rate of climate change is accelerating, and 27 years of negotiations has yielded no actual reduction in global greenhouse gas emissions. While we argue, inevitable misery is mounting up unjustly for young people and future generations.
The Girl with the DNR Tattoo
Presented by: Nneka Sederstrom, PhD, MPH, MA, FCCP, FCCM
Director, Clinical Ethics Department, Children's Hospital and Clinics of Minnesota and Affiliate Faculty, Center for Bioethics
What truly is a patient's right to self-determine? Can an advance directive take any form? This talk will look at the complexities of autonomous decision making and end of life through the eyes of a young adult expressing her wishes in the form of a tattoo.
2-690 Moos Tower, U of M East Bank Campus
Vector-Borne Diseases and Gene Drive
Speaker: Jerome Singh, BA, LLB, LLM, PhD, MHSc, Nelson R. Mandela School of Medicine, University of KwaZulu-Natal (UKZN); Joint Center for Bioethics, University of Toronto
Prof. Singh provides Ethical, Legal, Social Issues (ELSI) support to the Gates Foundation and its partners on gene drive research and its applications. In short, using a promising new technology called CRISPR/Cas9 to do targeted genome editing on mosquitos so that they produce male offspring (thus driving the species to extinction and, in the process, eliminating the spread of a disease), scientists will soon be field-testing these GM mosquitos in various settings. As you can imagine, this technology raises several ELSI issues
- Do we have the moral right to alter ecosystems?
- How do we deal with non-consensual communities or individuals in a field trial context, how do we engage with communities regarding this technology?
- How do deal with reparations if a field trial goes wrong, etc.
5-125 Moos Tower, U of M East Bank campus
Presented by: Jochen Vollmann, MD, PhD
Professor, Medical Ethics, Director, Institute for Medical Ethics and History of Medicine, and President, Center for Medical Ethics, Ruhr University Bochum, Germany
Palliative care is an innovative and growing field focussing on life-threatening illness and on the relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. In this “holistic” approach palliative care differs from science based modern medicine and shows similarities to other “holistic” approaches to the patient as a subject as well as to pre-modern medicine. Professor Vollmann discusses from his ongoing research palliative care exceptionalism and a broader perspective on end of life care and modern medicine and its’ consequences for future health care.
Seminars are free and open to the public.
2-520 Moos Tower, U of M East Bank Campus
Presented by: Jon Merz, MBA, JD, PhD
Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania
Waivers of informed consent for research participation are permitted under the Common Rule as well as the Exception from Informed Consent (EFIC) for emergency research rule. We examine waivers as embodiments of legal privilege, which permit actors to violate legal norms in furtherance of greater social goods. The emergency privilege, which allows a caregiver to provide emergency medical care to an incompetent victim of an accident, is the clearest example. But fundamental to the privilege to acting without consent is the presumption that reasonable persons in the patients' position would agree, if capable, and that no evidence exists that the particular patient would not agree. An assessment of what is known about participation and refusal rates in research show that the presumption with respect to standard care is not applicable to research. This suggests that, while researchers may assert the social utility of their studies are high enough to justify waivers,there is reason to suspect that many who would be enrolled under a waiver of consent would not want to be enrolled.Our analysis suggests that waivers should be rare, IRBs and researchers must explicitly address study acceptability, and it should be incumbent upon researchers to establish by clear, sound evidence that proposed studies would be acceptable in the community at large and the target population.
Seminars are free and open to the public.
Presented by: Emma Bedor Hiland, PhD Candidate
Department of Communication Studies, University of Minnesota
As our day-to-day lives are increasingly reliant upon (and enmeshed with) digital platforms, it is not surprising that the ways we address and manage our health generally, and mental health in particular, are increasingly digitized as well. Our culture’s generally favorable attitude toward digital solutions for everyday problems has led to the emergence of a digital mental health industry, which includes smartphone applications (“apps”) and telemental health services.
New and largely unregulated, the digital mental health industry presents its toolsets as affordable and a cost and time-effective alternative to many of the problems and barriers associated with the treatment of mental illness: clinician and specialist scarcity, treatment unaffordability, and the geographic remoteness of rural patients. Through a combination of fieldwork and interview analysis, this research addresses these claims and the future of the industry, with findings that are relevant to medical practitioners, technologists, researchers, mental health advocates and activists, and others whose work explores the connections between technology and medicine.
Speaker: Deborah Day Laxson
Founder of the Health Care Agent Literacy Project and author of the award winning book The Gray Zone: When Life Support No Longer Supports Life."
How does a non-medically trained individual respond when life support no longer supports life? Using her own real life example, Deborah brings the audience on her journey as she learned to navigate the complexities of the medical world in order to honor her husband’s choices regarding medical care at end-of-life.