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Related Concept Videos

Ethics in Research01:56

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Sometimes we want to see how people change over time, as in studies of human development and lifespan. When we test the same group of individuals repeatedly over an extended period of time, we are conducting longitudinal research. Longitudinal research is a research design in which data-gathering is administered repeatedly over an extended period of time. For example, we may survey a group of individuals about their dietary habits at age 20, retest them a decade later at age 30, and then again...
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Stakeholder views on returning research results.

Susanne B Haga1, Jennifer Q Zhao

  • 1Institute for Genome Sciences & Policy, Duke University, Durham, North Carolina, USA.

Advances in Genetics
|November 23, 2013
PubMed
Summary

Researchers and participants agree on returning study results, especially clinically significant genetic findings. Planning and budgeting for result disclosure should begin early in research development.

Keywords:
AttitudesConsentEthicsHuman subjects protectionResearch results

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Area of Science:

  • Biomedical research ethics
  • Genetics and genomics research

Background:

  • Returning research results is crucial in genetics and genomics due to data sensitivity and public interest.
  • Stakeholder attitudes towards disclosing research findings vary but show common ground.

Purpose of the Study:

  • To review stakeholder attitudes (participants, policymakers, researchers) on returning research results.
  • To identify consensus areas and discuss related issues like informed consent and cost.

Main Methods:

  • Review of stakeholder attitudes regarding the disclosure of research findings.
  • Analysis of consensus on returning summary reports and clinically significant individual results.

Main Results:

  • Consensus exists among stakeholders to return summary reports of study outcomes.
  • Agreement on returning individual research results of clinical significance is also noted.

Conclusions:

  • Encourage or require researchers to plan and budget for returning research results early in project development.
  • The time is appropriate to integrate result disclosure planning into the initial stages of research projects.