5 The related research records wait in the Yale Sterling Memorial Library closed to nearly everybody until

Question

5. The related research records wait in the Yale Sterling Memorial Library, closed to nearly everybody until

October 25, 2065. Individuals who believe they might have been subjects of the study may request data (subject to redaction) from the Jewish Board of Family and Children’s Services, who own the records. If subjects don’t ask for the data — because they’ve never heard of the study or they don’t have the technological or institutional literacy required — they will never know if they were included in this study. They will never know if they have a twin.

Would Internal Review Boards (IRBs) — the institutional committees that hold research protocols to ethical standards—all such a study design to proceed?

What ethical standards come into question? Do you think participants would want to be contacted? How do you weigh one potential ill, the harm of contacting someone who wouldn’t want to know, with another, the harm of not contacting someone who would want to be told? How do you notify someone that information they might want to have is available, without revealing too much? What if a subject’s twin has died since the experiment — should the subject still be contacted? Discuss any ethical concerns you have.

Social Science