Wednesday, March 16, 2005

Alliance for Human Research Protection

The Alliance for Human Research Protection (AHRP) is a national network of lay people and professionals dedicated to advancing responsible and ethical medical research practices, to ensure that the human rights, dignity and welfare of human subjects are protected, and to minimize the risks associated with such endeavors.

Over the past decade, the explosion of biomedical research has not been accompanied by an effective system of oversight or enforcement to protect those who volunteer. A body of well-documented evidence shows that in numerous instances the rights of human subjects have been violated. Unsuspecting research volunteers have sometimes suffered grievous injuries and even preventable death.

The causes are clear:

  • Research is increasingly driven by commercial concerns.
  • Conflicts of Interest are ubiquitous.
  • Disclosure of risks may be incomplete.
  • Regulatory safeguards have been violated.

Lax oversight by Institutional Review Boards has failed to prevent ethical violations even at major research institutions (e.g., University of Rochester, University of Pennsylvania, Duke University, University of Oklahoma, Johns Hopkins University, Fred Hutchinson Cancer Center, Harvard University, and the National Institutes of Health).

This year, more than 15 million Americans will be recruited into clinical trials.

The AHRP mission is to stand up - and speak out - for the human rights of research subjects of human experiments, especially those who are vulnerable and /or susceptible to manipulation and exploitation. Those who are incapable of exercising their right to informed consent are in greatest need of protection from research abuse
  • children (some as young as preschool age),
  • elderly residents of nursing homes, and others with impaired reasoning capacity, and
  • people suffering from a disabling mental illness.

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