Using Shared Tissues Samples for Genetic Research
A scenario meant to stimulate discussion about the ethical issues that arise when researchers want to share samples of human tissue for research; issues of informed consent and privacy arise here.
A neurobiologist in a Department of Psychiatry was studying hormone levels in the brains of people who died by suicide, samples of which he received from the local coroner with permission from the suicide's next of kin. He shared these samples with his collaborator at another university, who in turn shared them with a team of psychiatric genetic researchers there who were studying the genetics of depression.
These investigators found an unusual mutation in a gene associated in some families with depression in one of the samples. They contacted the neurobiologist and asked him if he would help them recruit the family of that sample's source into a genetic study of that mutation and its link to suicidal depression. This would mean seeking the identity of the sample's source from the coroner, and then contacting the next of kin with this new invitation.
- How should you respond, if you were the neurobiologist?
- How should the genetics team proceed if the neurobiologist declines to pursue the matter?
- Would it be appropriate to contact the coroner directly with their request?
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 Some information in these historical modules may be out-of-date; for instance, there may be a new edition of the professional society's code that is referred to in an item.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.