Communicating results in post-Belmont era biomonitoring studies: Lessons from genetics and neuroimaging research

BACKGROUND: Biomonitoring is a critical tool to assess the effects of chemicals on health, as scientists seek to better characterize life-course exposures from diverse environments. This trend, coupled with increased institutional support for community-engaged environmental health research, challenge established ethical norms related to biomonitoring results communication and data sharing between scientists, study participants, and their wider communities. METHODS: Through a literature review, participant observation at workshops, and interviews, we examine ethical tensions related to reporting individual data from chemical biomonitoring studies by drawing relevant lessons from the genetics and neuroimaging fields. RESULTS: In all three fields ethical debates about whether/how to report-back results to study participants are precipitated by two trends. First, changes in analytical methods have made more data accessible to stakeholders. For biomonitoring, improved techniques enable detection of more chemicals at lower levels, and diverse groups of scientists and health advocates now conduct exposure studies. Similarly, innovations in genetics have catalyzed large-scale projects and broadened the scope of who has access to genetic information. Second, increasing public interest in personal medical information has compelled imaging researchers to address demands by participants to know their personal data, despite uncertainties about their clinical significance. Four ethical arenas relevant to biomonitoring results communication emerged from our review: Tensions between participants’ right-to-know their personal results versus their ability or right-to-act to protect their health; whether and how to report incidental findings; informed consent in biobanking; and open-access data sharing. CONCLUSION: Ethically engaging participants in biomonitoring studies requires consideration of several issues, including scientific uncertainty about health implications and exposure sources, the ability of participants to follow up on potentially problematic results, tensions between individual and community research protections, governance and consent regarding secondary use of tissue samples, and privacy challenges in open access data sharing

"COMMON SYMPATHIES": SHELLEY'S "REVOLT OF ISLAM"

The Revolt of Islam, Shelley's longest and most neglected major work, contains some of his most rigorous thinking on the subject of revolution, as well as showing a substantial growth in poetic skill. This poem shows Shelley's empiricism, relentlessly examines the consequences of "reform" as well as tyranny, and is the transition between his earlier works and the great poems which would follow. Shelley wished The Revolt to appeal "to the common sympathies of every human breast," emphasizing both that his readers share important concerns and that he directs his poem primarily to their hearts. Both his desire to write for society, to converse with a readership rather than dictate to a coterie, and his belief--in accord with Hume--that the will is motivated by emotions, show Shelley's inheritance from the eighteenth century. Those few critics who have studied The Revolt have usually seen it as a simple chronicle of the war between Good, as represented by the revolutionaries, Laon and Cythna, and Evil, as appearing in the Tyrant and the Iberian Priest. While such a paradigm is indeed established in the allegorical opening Canto, I argue that as the poem progresses this facile dualism disintegrates. Even the protagonists are potential tyrants; Laon's contradictory language and Cythna's elevation as High Priestess of Equality demonstrate that revolution cannot be achieved instantly, finally, or easily, for evil derives not from external circumstance alone, but also from each man's potential "dark idolatry of self." Another important aspect of The Revolt is the personal immortality achieved by Laon and Cythna after their martyrdom. A seeming anomaly in a skeptical poem which consistently attacks Christianity, and indeed all organized religion, the Paradise of the concluding Canto is actually not an unreal or mystical state but the culmination of the poem's empiricism. Finally, this poem occupies a crucial place in Shelley's poetic development. Written after Queen Mab and before Prometheus Unbound, The Revolt is the link between them, in technique as well as content, for the dogmatic, declamatory style of earlier works gives way to narrative and conversation, and Necessity as the instrument of social change is replaced the individual will. In The Revolt Shelley found his mature voice, and his subject and conclusions here, the philosophy of reform, persist throughout his career