CASE STUDY 1



Carol is a Professor in the Biology department at WestTech. She is the PI for a study of genetic factors linked with various rare diseases. As part of the study, Carol recruited hundreds of human subjects (some of whom have been diagnosed with one of the rare diseases in question, others of whom have not been diagnosed with any of the rare diseases tracked by the study) to give samples of their DNA. Each human subject’s DNA was sequenced, and Carol and her team are in the process of analyzing the data delivered by the sequencing.


Carol gets an email from the State Crime Lab asking for access to the database of DNA sequence data Carol and her team have built from this study. The detective from the State Crime Lab explains in the email that they are trying to solve a “cold case,” looking for the person who committed a number of unsolved murders decades ago. The State Crime Lab has sequenced the DNA from biological samples the unidentified murderer left at the crime scenes. They believe a comparison to the sequenced DNA in Carol’s study could help the State Crime Lab identify close relatives of the killer, which in turn might help them identify the killer.


Carol views identifying killers to solve cold cases as a good thing. However, the human subjects who submitted their DNA for the study gave their informed consent on the basis of information that reads, in part:


“The data obtained by sequencing your DNA will be used only for the purposes of our study identifying genetic factors that may be linked to the diseases listed below. The results of our analysis will only be shared with you if you request it. All the results we publish will be anonymized (so no one will be able to use published results to identify your genetic data, or even to identify that you participated in the study).”

 

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