title: Stakeholder views on returning research results.
abstract: While the disclosure of research findings is relevant to all types of biomedical research, it has garnered particular attention with respect to genetics and genomics research due to some of the unique aspects of the data and the high public profile of the field. In this chapter, we review the attitudes of stakeholders (research participants, policymakers, and researchers) to define areas of consensus regarding the issue of returning research results across and within groups. In addition to stakeholder attitudes about obligations and interest in research results, other major related issues related to returning research results, such as informed consent, communication of research results, and cost, are discussed. Given the consensus between stakeholders to return summary reports of a study's outcomes and individual research results of clinical significance, we conclude that the time has come to encourage, if not require, researchers to consider these issues in the developmental planning stages of a project and to plan and budget accordingly.
authors.affiliation: Institute for Genome Sciences & Policy, Duke University, Durham, North Carolina, USA. Electronic address: susanne.haga@duke.edu.
authors.forename: Susanne B
authors.initials: SB
authors.lastname: Haga
authors.forename: Jennifer Q
authors.initials: JQ
authors.lastname: Zhao
mesh_terms: D001290:Attitude; D018070:Biological Specimen Banks; D002648:Child; D030881:Disclosure; D036281:Genetic Research / Q000191:economics / Q000941:ethics; D006801:Humans; D007258:Informed Consent; D010290:Parents; D012107:Research Design
keywords: Attitudes; Consent; Ethics; Human subjects protection; Research results