Dataset Information

Medical Genetics Ethics Case Collection: Discussion Materials for Medical Students in the Genomic Era.

ABSTRACT:

Introduction

This collection of cases in medical genetics focuses on ethical dimensions of genetic testing. Given the recent and continuing revolution in genetic testing technologies, understanding the nuances of genetic tests and the implications of their outcomes for patients is a critical learning goal for medical students.

Methods

This case collection was developed for first-year medical students. The cases fall into two types: discussion cases that lend themselves to both small-group and lecture settings and brief audience-response clicker cases to be used in larger lecture settings. The cases span topics such as direct-to-consumer genetic testing, patient privacy, economic and legal issues of genetic testing, and secondary findings in whole exome/genome sequencing. The clicker cases can be used to punctuate class sessions on the related science, while the discussion cases can be deployed as a single 2-hour session focusing on ethics. The associated materials include teaching notes on the scientific and ethical dimensions of the cases, a slide presentation of the cases, and implementation advice.

Results

Students found that engaging with these cases was very stimulating and eye-opening. Student comments indicated that they appreciated the opportunity to grapple with the ethical dimensions of the genetic testing technologies and that the challenges brought to light highlighted the complexity of medical practice in the genomic era.

Discussion

Although these cases were originally developed for use with medical students, they could easily be adapted for use in postgraduate and CME settings to explore complex ethical scenarios on which even the experts disagree.

SUBMITTER: Dasgupta S

PROVIDER: S-EPMC6342050 | biostudies-literature | 2017 Mar

REPOSITORIES: biostudies-literature

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Publications

Medical Genetics Ethics Case Collection: Discussion Materials for Medical Students in the Genomic Era.

Dasgupta Shoumita S

MedEdPORTAL : the journal of teaching and learning resources 20170327

<h4>Introduction</h4>This collection of cases in medical genetics focuses on ethical dimensions of genetic testing. Given the recent and continuing revolution in genetic testing technologies, understanding the nuances of genetic tests and the implications of their outcomes for patients is a critical learning goal for medical students.<h4>Methods</h4>This case collection was developed for first-year medical students. The cases fall into two types: discussion cases that lend themselves to both sma ...[more]

PMID: 30800764

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Project description:BackgroundTo describe the ethical issues and experiences of scientists conducting mixed methods health services research and to advance empirical and conceptual discussion on ethical integrity in mixed methods health research.MethodsThe study was conducted with 64 scholars, faculty and consultants from the NIH-funded Mixed Methods Research Training Program (MMRTP) for the Health Sciences. This was a cross-sectional study. Survey results were analyzed using descriptive statistics to characterize responses and open coding to summarize strategies about eight ethical mixed methods research issues. Respondents completed an online survey to elicit experiences related to eight ethical issues (informed consent, confidentiality, data management, burden, safety, equitable recruitment, communication, and dissemination) and strategies for addressing them.ResultsOnly about one-third of respondents thought their research ethics training helped them plan, conduct, or report mixed methods research. The most frequently occurring ethical issues were participant burden, dissemination and equitable recruitment (> 70% endorsement). Despite occurring frequently, < 50% of respondents rated each ethical issue as challenging. The most challenging ethical issues were related to managing participant burden, communication, and dissemination. Strategies reported to address ethical issues were largely not specific or unique to mixed methods with the exception of strategies to mitigate participant burden and, to a lesser degree, to facilitate equitable recruitment and promote dissemination of project results.ConclusionsMixed methods health researchers reported encountering ethical issues often yet varying levels of difficulty and effectiveness in the strategies used to mitigate ethical issues. This study highlights some of the unique challenges faced by mixed methods researchers to plan for and appropriately respond to arising ethical issues such as managing participant burden and confidentiality across data sources and utilizing effective communication and dissemination strategies particularly when working with a multidisciplinary research team. As one of the first empirical studies to examine mixed methods research ethics, our findings highlight the need for greater attention to ethics in health services mixed methods research and training.

Dataset Information

Medical Genetics Ethics Case Collection: Discussion Materials for Medical Students in the Genomic Era.

Introduction

Methods

Results

Discussion

Publications

Medical Genetics Ethics Case Collection: Discussion Materials for Medical Students in the Genomic Era.

Similar Datasets

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