What has changed since Tuskegee?

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June 25, 2020

Shocking examples of research abuse prompted gradual changes in the way people are protected. The U.S. Office of Human Research Protections was established to protect the rights, welfare, and well-being of research participants. Many safeguards are in place today.

  • Being in a study is voluntary. People are free to decide if they want to join the study. They can also stop at any time.
  • All human research is checked by a group called an Institutional Review Board (IRB). Members of the IRB are not part of the study team. Their job is to protect the rights, safety, and well-being of research volunteers.
  • In almost every study, researchers must have informed consent of everyone who takes part in a clinical research study. Informed consent means people are given all the important information about the study before they sign up.
  • There are some very limited situations where informed consent may not be required. For example, research may be done for treatment of medical emergencies when the person can’t give consent. However, there are very strict rules about when such research can occur.
Visit WePartner4Research to learn more about how clinical trials work. There you will find out why research volunteers are so important for improving health, including ending the coronavirus pandemic.

The official name of the virus that started a worldwide outbreak in late 2019 is “Severe Acute Respiratory Syndrome Coronavirus 2.”  The abbreviation is SARS-CoV-2. When the virus infects someone, the diagnosis is called “Coronavirus Disease 2019.” The abbreviation is COVID-19. In COVID-19, ‘CO’ stands for ‘corona,’ ‘VI’ for ‘virus,’ and ‘D’ for disease.
Two members of the GHUCCTS Participant Advisory Board reading a packet at a conference table

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