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Related Experiment Video

Updated: May 7, 2026

In Vivo Functional Study of Disease-associated Rare Human Variants Using Drosophila
06:41

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Published on: August 20, 2019

Returning genetic research results: study type matters.

Amy L McGuire1, Jill Oliver Robinson, Rachel B Ramoni

  • 1Center for Medical Ethics & Health Policy, Baylor College of Medicine, Houston, TX 77030, USA.

Personalized Medicine
|October 1, 2013
PubMed
Summary
This summary is machine-generated.

Most genome-wide association studies (GWAS) investigators do not return individual genetic research results. Ethical guidelines for returning results should consider the specific research context and study type.

Keywords:
ethicsgenome-wide associationgenomicspolicyreturn of resultswhole-genome sequencing

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Area of Science:

  • Genetics
  • Bioethics

Background:

  • Returning individual genetic research results is a significant ethical challenge requiring policy attention.
  • Practices and perspectives of genome-wide association studies (GWAS) investigators regarding result return are not well understood.

Purpose of the Study:

  • To explore the current practices and perspectives of GWAS investigators concerning the return of individual genetic research results.

Main Methods:

  • A semistructured interview approach was used.
  • 35 corresponding authors of published GWAS were interviewed.
  • Conventional content analysis was applied to interview transcripts.

Main Results:

  • The majority of GWAS investigators reported not returning individual genetic research results.
  • Some investigators had experience returning results from linkage or family studies.
  • A common sentiment was that returning results will become more prevalent with whole-genome and whole-exome sequencing.

Conclusions:

  • The decision to return genetic research results should be informed by the research context and study type.
  • Developing more nuanced ethical guidelines that incorporate these contextual factors is necessary.