Genomic Data and the Research Enterprise

In the 1940s, researchers recruited over 5,000 people from the town of Framingham, Massachusetts to participate in a study to discover the causes of heart disease. Over 60 years later, the children and grandchildren of the original cohort are also enrolled in the study, in addition to new cohorts with diverse racial and ethnic backgrounds (Framingham Heart Study, n.d.).
The Framingham Heart Study is one of the largest and longest running research projects in the United States. Over the life of the study, researchers have added new objectives and new tools and tests in response to advancing science and technology, which have given rise to new ethical considerations. One new objective is to discover associations between genetic mutations and disease, leading researchers to begin conducting genetic testing. This fictionalized deliberative scenario is loosely based on an ethical issue encountered by the study.
You are a member of the study’s ethics board. The investigators have decided to embark on genetic research to better understand the genetic risk factors for certain diseases. It has always been common practice in the study to inform participants about concerning results, but genetic information can be different—it can reveal a wider array of information than other tests, the meaning of which can be uncertain. In addition, it can reveal information about biological relatives, who have not consented to be in the study, and put participants in the position of having to decide whether to disclose genetic information to them. Many of the participants are likely to have one or several genetic mutations—some of which might lead to cancer, others of which have unknown effects.

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