When the Proposed Research May Be Objectionable to the Source of the Tissue

Description

A scenario meant to stimulate discussion about the ethical issues that arise in genetic research and ethnic group susceptibility.

Body

A researcher interested in the genetics of alcoholism has identified what she believes is a candidate gene for susceptibility. Knowing the prevalence of alcoholism is especially high in certain ethnic groups, she asks a tissue repository for samples of tissue from Native Americans living in the Southwest, and from a control group of non-Native Americans from the same region. She neither requests nor needs any identifying information with each sample other than whether it is from a Native American, so that the samples could be taken from unlinked samples.

  1. Is it likely that at least some people whose specimens might be used in this study might object to it? If so, what objections might they offer?
  2. What arguments might the scientist proposing the study give in favor of obtaining the samples even if some of the sample sources might object if they knew the use to which it was being put?
  3. Should institutions or funders of research require that potentially objectionable research be subject to special review? How might such a review be conducted, and by whom?
Notes

Caroline Whitbeck introduced methods and modules for discussing numerous issues in responsible conduct of research at a Sigma Xi Forum in 2000. Partial funding for the development of this material came from an NIH grant.

You can find the entire sequence on the OEC at Scenarios for Ethics Modules in the Responsible Conduct of Research. Some information in these historical modules may be out-of-date; for instance, there may be a new edition of the professional society's code that is referred to in an item. If you have suggestions for updates, please contact the OEC.

Citation
Caroline Whitbeck. . When the Proposed Research May Be Objectionable to the Source of the Tissue. Online Ethics Center. DOI:. https://onlineethics.org/cases/scenarios-ethics-modules-responsible-conduct-research/when-proposed-research-may-be.