10 results
Search Results
2. Voluntary Registries to Support Improved Interaction Between Police and People Living with Dementia.
- Author
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Ross, Heather M., Bowman, Diana M., and Wani, Jessica M.
- Subjects
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REPORTING of diseases , *ALZHEIMER'S disease , *POLICE ethics , *PUBLIC health , *DEMENTIA patients , *COMMUNICATION , *DEMENTIA , *INTERPERSONAL relations , *PATIENT safety - Abstract
This paper provides an overview of the societal impact of a rising dementia population and examines the legal and ethical implications posed by voluntary registries as a community-oriented solution to improve interactions between law enforcement and individuals with dementia. It provides a survey of active voluntary registries across the United States, with a focus on Arizona, which has the highest projected growth for individuals living with dementia in the country. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
3. The Roles and Responsibilities of Physicians in Patients' Decisions about Unproven Stem Cell Therapies.
- Author
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Levine, Aaron D. and Wolf, Leslie E.
- Subjects
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MEDICAL tourism , *STEM cell transplantation , *INTERNATIONAL medical laws & legislation , *PHYSICIAN-patient relations , *THERAPEUTICS , *TREATMENT of neurodegeneration , *MEDICAL care , *COMMUNICATION , *DECISION making , *HEMATOPOIETIC stem cell transplantation , *INFORMED consent (Medical law) , *INTERVIEWING , *MEDICAL protocols , *PATIENT education , *PATIENTS , *PHYSICIANS , *SOUND recordings , *TRAVEL , *QUALITATIVE research , *ETHICAL decision making , *GOVERNMENT regulation , *OCCUPATIONAL roles , *THEMATIC analysis , *ETHICS - Abstract
Capitalizing on the hype surrounding stem cell research, numerous clinics around the world offer 'stem cell therapies' for a variety of medical conditions. Despite questions about the safety and efficacy of these interventions, anecdotal evidence suggests a relatively large number of patients are traveling to receive these unproven treatments - a practice called 'stem cell tourism.' Because these unproven treatments pose risks to individual patients and to legitimate translational stem cell research, stem cell tourism has generated substantial policy concern and inspired attempts to reduce these risks through the development of guidelines for patients and medical practitioners. This paper examines the roles and responsibilities of physicians in patients' home countries with respect to patients' decisions to try unproven stem cell therapies abroad. Specifically, it examines professional guidance from two organizations - the American Medical Association and the International Society for Stem Cell Research - and assesses physicians' professional and legal obligations to patients considering unproven stem cell therapies. Then, drawing on qualitative interviews conducted with patients who traveled abroad for unproven stem cell treatments, it explores the roles that physicians actually play in patients' decisions and compares these actual roles with their professional and legal responsibilities. The paper concludes with a discussion of strategies to help improve the guidance physicians provide to patients considering unproven treatments. [ABSTRACT FROM AUTHOR]
- Published
- 2012
- Full Text
- View/download PDF
4. A Bottom-Up Approach to Understanding Low-Income Patients: Implications for Health-Related Policy.
- Author
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Viswanathan, Madhu, Duncan, Ronald, Grigortsuk, Maria, and Sreekumar, Arun
- Subjects
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MEDICAL care of poor people , *HEALTH policy , *AFFECT (Psychology) , *COMMUNICATION , *HEALTH , *HEALTH services accessibility , *INCOME , *HEALTH insurance , *INTERPERSONAL relations , *MEDICAL needs assessment , *MEDICAL care use , *PHYSICIAN-patient relations , *INFORMATION resources , *DECISION making in clinical medicine , *HEALTH literacy , *PATIENTS' attitudes , *HEALTH & social status - Abstract
A bottom-up approach grounded in micro-level understanding of the thinking, feeling, behavioral, and social aspects of living with low income and associated low literacy can lead to greater understanding and improvement of interactions in the health arena. This paper draws on what we have learned about marketplace interactions in subsistence economies to inform innovations in medical education, design and delivery of healthcare for lowincome patients, outreach education, and future micro-level research at the human-healthcare interface. [ABSTRACT FROM AUTHOR]
- Published
- 2018
- Full Text
- View/download PDF
5. Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.
- Author
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Wolf, Susan M., Scholtes, Emily, Koenig, Barbara A., Petersen, Gloria M., Berry, Susan A., Beskow, Laura M., Daly, Mary B., Fernandez, Conrad V., Green, Robert C., LeRoy, Bonnie S., Lindor, Noralane M., O'Rourke, P. Pearl, Breitkopf, Carmen Radecki, Rothstein, Mark A., Van Ness, Brian, and Wilfond, Benjamin S.
- Subjects
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AGE distribution , *CAPACITY (Law) , *COMMUNICATION , *DECISION making , *DOCUMENTATION , *FAMILIES , *GENETIC research , *RESEARCH ethics , *RESPONSIBILITY , *PATIENTS' rights , *DISCLOSURE , *OCCUPATIONAL roles , *ACCESS to information , *RESEARCH personnel , *HUMAN research subjects - Abstract
Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research (CSER) Consortium. The authors then negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. [ABSTRACT FROM AUTHOR]
- Published
- 2018
- Full Text
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6. Considerations for Returning Research Results to Culturally Diverse Participants and Families of Decedents.
- Author
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Garrison, Nanibaa'A.
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AUTONOMY (Psychology) , *COMMUNICATION , *CULTURE , *DEATH , *DECISION making , *FAMILIES , *GENETIC research , *PATIENT-family relations , *CULTURAL pluralism , *RESEARCH ethics , *GENOMICS , *DISCLOSURE , *CULTURAL awareness - Abstract
There has been considerable debate on which genomic research results to return to participants and when those results should be returned, but little attention to how those results should be returned, especially to minority and culturally diverse participants. This paper explores the cultural and ethical considerations around returning research results to participants and families of culturally diverse backgrounds, with a special focus on considerations when the research participant is deceased, and raises points for further discussion. [ABSTRACT FROM AUTHOR]
- Published
- 2015
- Full Text
- View/download PDF
7. A Family-Centered Model for Sharing Genetic Risk.
- Author
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Daly, Mary B.
- Subjects
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GENETIC disorders , *BIOETHICS , *COMMUNICATION , *FAMILIES , *FAMILY medicine , *MATHEMATICAL models , *TUMORS , *GENETIC testing , *GENOMICS , *DISCLOSURE , *THEORY , *SOCIAL support , *ACCESS to information , *DISEASE risk factors - Abstract
The successes of the Human Genome Project have ushered in a new era of genomic science. To effectively translate these discoveries, it will be critical to improve the communication of genetic risk within families. This will require a systematic approach that accounts for the nature of family relationships and sociocultural beliefs. This paper proposes the application of the Family Systems Illness Model, used in the setting of cancer care, to the evolving field of genomics. [ABSTRACT FROM AUTHOR]
- Published
- 2015
- Full Text
- View/download PDF
8. Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.
- Author
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Wolf, Susan M., Branum, Rebecca, Koenig, Barbara A., Petersen, Gloria M., Berry, Susan A., Beskow, Laura M., Daly, Mary B., Fernandez, Conrad V., Green, Robert C., LeRoy, Bonnie S., Lindor, Noralane M., O'Rourke, P. Pearl, Breitkopf, Carmen Radecki, Rothstein, Mark A., Van Ness, Brian, and Wilfond, Benjamin S.
- Subjects
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COMMUNICATION , *DEATH , *DECISION trees , *FAMILIES , *GENETIC research , *INFORMED consent (Medical law) , *MEDICAL ethics , *PRIVACY , *RESEARCH funding , *RESEARCH ethics , *RESPONSIBILITY , *GENOMICS , *DISCLOSURE , *HEALTH Insurance Portability & Accountability Act , *ACCESS to information , *HUMAN research subjects , *GENETIC privacy - Abstract
Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death. [ABSTRACT FROM AUTHOR]
- Published
- 2015
- Full Text
- View/download PDF
9. Relationships Matter: The Role for Social-Emotional Learning in an Interprofessional Global Health Education.
- Author
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Guerin, Toby Treem
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INTERPERSONAL relations , *PUBLIC health education , *EMOTIONS , *SOCIAL capital , *DELINQUENT behavior , *CRIMINAL behavior , *ETHICS , *PREVENTION , *PHYSIOLOGY , *SOCIAL emotional learning , *ABILITY , *COMMUNICATION , *DECISION making , *CURRICULUM , *INTERDISCIPLINARY education , *INTERPROFESSIONAL relations , *LEARNING strategies , *PUBLIC health , *SOCIAL skills , *TEAMS in the workplace , *WORLD health , *TRAINING , *GROUP process , *JOB performance - Abstract
As global health curricula and competencies are defined, the instructional foundation of practice-based learning and soft skills training requires reexamination. This paper explores the integration of social-emotional instruction into global health education, specifically highlighting its role in interprofessional learning environments. One method to teach the core competencies in the higher education context is through restorative practices. Restorative practices is a 'social science that integrates developments from a variety of disciplines and fields in order to build healthy communities, increase social capital, decrease crime and antisocial behavior, repair harm and restore relationships.' The restorative philosophy incorporates the core competencies of socio-emotional learning and views conflict as an opportunity for learning. The first part discusses the foundations of social-emotional learning (SEL). It then explores the applicability of SEL in interprofessional and global health education. [ABSTRACT FROM AUTHOR]
- Published
- 2014
- Full Text
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10. Return of Research Results: General Principles and International Perspectives.
- Author
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Lévesque, Emmanuelle, Joly, Yann, and Simadr, Jacques
- Subjects
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TISSUE banks , *DISCLOSURE , *BENEVOLENCE , *COMMUNICATION , *CONCEPTUAL structures , *HEALTH , *INFORMATION resources management , *INFORMED consent (Medical law) , *PHYSICIAN-patient relations , *RESEARCH ethics , *RESPECT , *SOCIAL justice , *INFORMATION resources , *ETHICAL decision making , *GENOMICS , *ACCESS to information , *HUMAN research subjects , *ETHICS - Abstract
Five years ago, an article co-written by two of us (Joly and Simard) presented an emerging trend to disclose certain individual genetic results to research participants. Since then, both technologies and research practices have evolved significantly. Given this rapid evolution, our goal is to provide updated and thorough guidance on this issue. Our paper begins by identifying the ethical principles that support the return of results: justice, beneficence, and respect for persons. Then, it presents the results of an analysis of international norms on the return of results, covering both general and individual research results. It reveals existing divergence and consensus on these topics within the international community. With the goal of promoting greater harmonization, we conclude by proposing a flexible framework for the return of individual research results. [ABSTRACT FROM AUTHOR]
- Published
- 2011
- Full Text
- View/download PDF
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