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Patient Research Protections

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Patient research protections are intended to protect the safety and privacy of research participants. These protections include requiring a researcher to obtain informed consent before conducting research with the human participant or their bio-specimens, ensuring the privacy and/or de-identification of the participant's identifiable data, and conducting frequent review of research studies to ensure that patient research protections are being adequately upheld.

Why support Patient Research Protections?

  • Patient research protections ensure that all research approved by the IRB is conducted in an ethical manner.
  • Obtaining informed consent, with the ability to revoke it at any time, provides autonomy to the human participant. This autonomy allows the participant to engage only in research they wish to engage in, whether directly or via the use of their bio-specimens.
  • Ensuring the privacy of human participants and/or de-identifying their bio-specimens ensures that human participants will not be subject to genetic or any other such discrimination as a result of participating in a research study.

What has Genetic Alliance done to support Patient Research Protections?

  • Genetic Alliance has commented on NPRM Amendments to the Common Rule.
  • Genetic Alliance has also wrote to the U.S. Department of Health & Human Services in an OHRP Comments Sign On Letter.

Genetic Alliance's Previous Statements on Patient Research Protections

Comments on NPRM Amendments to the Common Rule, January 2, 2016

OHRP Comments Sign On Letter, January 22, 2015

Request for Comment Period Extension on OHRP Draft Guidance, November 18, 2014

 

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