Studies on Understanding Individual Willingness to Disclose Genetic Information to Public and Private Stakeholders

While technologies for genetic sequencing have increased the promise of personalized medicine, they simultaneously pose threats to personal privacy. The public’s desire to protect itself from unauthorized access to information may limit the uses of this valuable resource. To date, there is limited understanding about the public’s attitudes toward the regulation and sharing of such information. We sought to understand the drivers of individuals’ decisions to disclose genetic information to a third party in a setting where disclosure potentially creates both private and social benefits, but also carries the risk of potential misuse of private information. We conducted two separate but related studies. First, we administered surveys to college students and parents, to determine individual attitudes toward and inter-generational influences on the disclosure decision. Second, we conducted a game-theory based experiment that assessed how participants’ decisions to disclose genetic information are influenced by societal and health factors. Key survey findings indicate that concerns about genetic information privacy negatively impact the likelihood of disclosure while the perceived benefits of disclosure and trust in the institution receiving the information have a positive influence. The experiment results also show that the risk of discrimination negatively affects the likelihood of disclosure, while the positive impact that disclosure has on the probability of finding a cure and the presence of a monetary incentive to disclose, increase the likelihood. We also study the determinants of individuals’ decision to be informed of findings about their health, and how information about health status is used for financial decisions.

DEGENERATE MUSIC?! MUSICAL CENSORSHIP IN THE THIRD REICH

In 1938, in Düsseldorf, the Nazis put on an exhibit entitled "Entartete Musik” (degenerate music), which included composers on the basis of their “racial origins” (i.e. Jews), or because of the “modernist style” of their music. Performance, publication, broadcast, or sale of music by composers deemed “degenerate” was forbidden by law throughout the Third Reich. Among these composers were some of the most prominent composers of the first half of the twentieth-century. They included Stravinsky, Schoenberg, Webern, Berg, Mahler, Ernst Krenek, George Gershwin, Kurt Weill, Erwin Schulhoff, and others. The music of nineteenth-century composers of Jewish origin, such as Mendelssohn and Meyerbeer, was also officially proscribed. In each of the three recitals for this project, significant works were performed by composers who were included in this exhibition, namely, Mendelssohn, Webern, Berg, Weill, and Hans Gal. In addition, as an example of self-censorship, a work of Karl Amadeus Hartmann was included. Hartmann chose “internal exile” by refusing to allow performance of his works in Germany during the Nazi regime. One notable exception to the above categories was a work by Beethoven that was presented as a bellwether of the relationship between music and politics. The range of styles and genres in these three recitals indicates the degree to which Nazi musical censorship cut a wide swath across Europe’s musical life with devastating consequences for its music and culture.