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Clinical Trials - Native Issues

QOL Tree Clinical Trials Importance Native Issues Types Benefits & Drawbacks Barriers CT Phases Information Collected

What are some American Indian / Alaska Native issues we have with clinical trials?

Many American Indians / Alaska Natives believe:

  • Most clinical trials are done on us rather than other minorities. Actually we are almost never included in clinical trials.
  • We are used like guinea pigs. Guinea pigs do not have a choice about taking part in a study, but we do.
  • We are the frequent victims of experiments by the US government. This was true, but not likely today.
  • We are over-studied with little good going back to the local community.
  • What are some explanations American Indian / Alaska Native leaders have for not participating in studies?

Additional American Indian / Alaska Native cultural issues

  • Cultural issues may affect the recruitment, retention and conduct of a trial
    • For example, what if the clinical trial required the patient to have a medical check up every week over a 1 month period of time and the patient lived 200 miles away from the clinic?
    • What if that month overlapped with annual tribal ceremony or holiday?
    • Such as, Sun Dance or Green Corn ceremonies?
  • What if the clinical trial required eating certain nutritious foods daily?
    • But the participant could not afford or find those foods in local markets
    • Or a tribal ceremony required several days of fasting?
  • What if local tribal cultural practices include taking herbal treatments recommended by the traditional Indian healer?
    • But those herbs interfered with the drugs used for cancer treatment?
  • Poverty may affect compliance
    • 5 a day includes eating five servings of fruits and vegetables a day. This is costly
  • Health care standards and quality treatment are decided by these trials
    • If Natives are left out of these trials …
    • We have no influence on such standards.

Ways clinical trials could be more inclusive of American Indians / Alaska Natives

  • Tribal or Native Health Boards can:
    • Rank cancer within the top 5 on the Contracted Health Services list for their tribe.
    • Meet with American Indian / Alaska Native representatives, the National Cancer Institute (NCI), or Cancer. Cooperative Groups to discuss the clinical trials studies for cultural acceptability
      • The NCI is a federal agency that does more scientific cancer research than any other organization in the world. It is located in Maryland, USA.
      • Cancer Cooperative Groups are groups of healthcare providers who develop clinical trials that are carried out throughout the country.
  • Tribal / IHS / Urban Indian clinics can:
    • Transport the patient and family member to the health care setting providing the clinical trial.
    • Provide housing for the patient and family member
  • Call NIH clinical trials information