Dataset Information

Ethics Literacy and "Ethics University": Two Intertwined Models for Public Involvement and Empowerment in Bioethics.

ABSTRACT:

Background

Informing lay citizens about complex health-related issues and their related ethical, legal, and social aspects (ELSA) is one important component of democratic health care/research governance. Public information activities may be especially valuable when they are used in multi-staged processes that also include elements of information and deliberation.

Objectives

This paper presents a new model for a public involvement activity on ELSA (Ethics University) and evaluation data for a pilot event.

Methods

The Ethics University is structurally based on the "patient university," an already established institution in some German medical schools, and the newly developed concept of "ethics literacy." The concept of "ethics literacy" consists of three levels: information, interaction, and reflection. The pilot project consisted of two series of events (lasting 4?days each).

Results

The thematic focus of the Ethics University pilot was ELSA of regenerative medicine. In this pilot, the concept of "ethics literacy" could be validated as its components were clearly visible in discussions with participants at the end of the event. The participants reacted favorably to the Ethics University by stating that they felt more educated with regard to the ELSA of regenerative medicine and with regard to their own abilities in normative reasoning on this topic.

Conclusion

The Ethics University is an innovative model for public involvement and empowerment activities on ELSA theoretically underpinned by a concept for "ethics literacy." This model deserves further refinement, testing in other ELSA topics and evaluation in outcome research.

SUBMITTER: Strech D

PROVIDER: S-EPMC4753284 | biostudies-literature | 2015

REPOSITORIES: biostudies-literature

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Publications

Ethics Literacy and "Ethics University": Two Intertwined Models for Public Involvement and Empowerment in Bioethics.

Strech Daniel D Hirschberg Irene I Meyer Antje A Baum Annika A Hainz Tobias T Neitzke Gerald G Seidel Gabriele G Dierks Marie-Luise ML

Frontiers in public health 20160215

<h4>Background</h4>Informing lay citizens about complex health-related issues and their related ethical, legal, and social aspects (ELSA) is one important component of democratic health care/research governance. Public information activities may be especially valuable when they are used in multi-staged processes that also include elements of information and deliberation.<h4>Objectives</h4>This paper presents a new model for a public involvement activity on ELSA (Ethics University) and evaluation ...[more]

PMID: 26913277

Similar Datasets

Project description:BACKGROUND:Emerging evidence about the effects of endocrine disruptors on asthma symptoms suggests new opportunities to reduce asthma by changing personal environments. Right-to-know ethics supports returning personal results for these chemicals to participants, so they can make decisions to reduce exposures. Yet researchers and institutional review boards have been reluctant to approve results reports in low-income communities, which are disproportionately affected by asthma. Concerns include limited literacy, lack of resources to reduce exposures, co-occurring stressors, and lack of models for effective reporting. To better understand the ethical and public health implications of returning personal results in low-income communities, we investigated parents' experiences of learning their children's environmental chemical and biomonitoring results in the Green Housing Study of asthma. METHODS:The Green Housing Study measured indoor chemical exposures, allergens, and children's asthma symptoms in "green"-renovated public housing and control sites in metro-Boston and Cincinnati in 2011-2013. We developed reports for parents of children in the study, including results for their child and community. We observed community meetings where results were reported, and metro-Boston residents participated in semi-structured interviews in 2015 about their report-back experience. Interviews were systematically coded and analyzed. RESULTS:Report-back was positively received, contributed to greater understanding, built trust between researchers and participants, and facilitated action to improve health. Sampling visits and community meetings also contributed to creating a positive study experience for participants. Participants were able to make changes in their homes, such as altering product use and habits that may reduce asthma symptoms, though some faced roadblocks from family members. Participants also gained access to medical resources, though some felt that clinicians were not responsive. Participants wanted larger scale change from government or industry and wanted researchers to leverage study results to achieve change. CONCLUSIONS:Report-back on environmental chemical exposures in low-income communities can enhance research benefits by engaging residents with personally relevant information that informs and motivates actions to reduce exposure to asthma triggers. Ethical practices in research should support deliberative report-back in vulnerable communities.

Dataset Information

Ethics Literacy and "Ethics University": Two Intertwined Models for Public Involvement and Empowerment in Bioethics.

Background

Objectives

Methods

Results

Conclusion

Publications

Ethics Literacy and "Ethics University": Two Intertwined Models for Public Involvement and Empowerment in Bioethics.

Similar Datasets

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