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Case Study: Reporting Incidental Findings

Barbara S., her husband, and her son participated in a study investigating the genetics of multiple sclerosis because her son is affected by the disease. While researchers compiled genetic information from many participants, Barbara and her family assumed their normal lives. Although she expected news about her son’s multiple sclerosis, and perhaps even an answer to what side of his parentage the disease came from, Barbara was surprised when she received a phone call that some information had been uncovered that affected her specifically. Barbara went in to meet with the researchers and learned that, while doing their studies on MS, the doctors discovered an incidental connection between Barbara’s genes and a greatly increased chance of Alzheimer’s disease after 65. Barbara is about to celebrate her 55th birthday, and is devastated by this news. There is not much medical action Barbara can take, and though she is a healthy and active adult, the news worries Barbara to no end.

Was it an ethical decision to tell Barbara the news that her genes may lead to a disease that has no cure and no sure preventative measures?

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