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A Real-world What-Where-When Memory Test
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Returning Results: Let's Be Honest!

Bernice S Elger1,2, Eva De Clercq1

  • 11 Institute for Biomedical Ethics, University of Basel , Basel, Switzerland .

Genetic Testing and Molecular Biomarkers
|March 18, 2017
PubMed
Summary
This summary is machine-generated.

Biobank research should adopt a return-of-results policy, allowing participants to receive clinically relevant findings. Donors must consent to this policy, ensuring transparency and ethical research practices.

Keywords:
biobankinghonestypolicyrefusalreturn of results

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Area of Science:

  • Biobanking research
  • Genomic medicine
  • Participant rights

Background:

  • Biobank research offers potential life-saving benefits to participants.
  • Returning research results raises ethical questions regarding participant rights and researcher duties.
  • Current policies vary on whether participants can refuse results.

Purpose of the Study:

  • To advocate for a return-of-results policy in biobanking.
  • To address the ethical and practical implications of participants refusing clinically actionable results.
  • To emphasize the importance of transparency and honesty in biobanking regulations.

Main Methods:

  • Ethical analysis of return-of-results policies.
  • Discussion of participant autonomy versus potential benefit.
  • Review of existing biobanking guidelines and best practices.

Main Results:

  • A policy limiting refusal of clinically relevant and actionable results is proposed.
  • Biobanks should require informed consent to this policy.
  • Participants unwilling to accept this policy should have the option not to participate.

Conclusions:

  • Implementing a mandatory return-of-results policy enhances ethical research.
  • Informed consent regarding result return is crucial for biobanking integrity.
  • This policy promotes honesty and participant well-being in biobank research.