Responding to a Request for Information


A scenario meant to stimulate discussion about the ethical issues that arise when a genetic predisposition is found among a certain part of the population.


As a cytogeneticist who has spent several years studying the causes of human chromosome abnormalities, you are frequently asked to provide background information (and especially risk information) to couples who perceive themselves to be at an increased risk for chromosomally abnormal pregnancies. A young couple found your name through a Down syndrome-related web site, and contacted you by phone. They have had one previous pregnancy, which resulted in a child with trisomy 21 (Down syndrome). They are mid-way through a second pregnancy, which also has been diagnosed as trisomy 21. Not surprisingly, they are concerned about subsequent pregnancies and want to know if all of their pregnancies will involve a fetus with an extra chromosome 21. Your lab has the expertise to conduct and/or interpret tests (e.g., analyses of parental origin and heterozygosity/homozygosity in trisomic individuals; analyses of aneuploidy in male gametes) that may address some of their concerns. These tests are not routinely conducted by clinical laboratories in their area.

  1. How do you respond?
  2. Suppose they ask you to conduct clinical tests not available to them in their locale. How do you respond?
  3. How should you respond?

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 Some information in these historical modules may be out-of-date; for instance, there may be a new edition of the professional society's code that is referred to in an item.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.

Caroline Whitbeck. . Responding to a Request for Information. Online Ethics Center. DOI:.