Returning individual results to participants in research studies is gaining acceptance and policy guidance is now available for investigators to develop a plan for returning results at the local level. However, returning results discovered through the work of an international scientific research consortium presents additional ethical and procedural difficulties. No general guidance is available for international consortia that wish to consider this issue, but there are examples of internal policies that are being used by consortia such as the International Cancer (...) Genome Consortium (ICGC) and the Type 1 Diabetes Genetics Consortium (T1DGC). This paper presents the policy stance these studies have adopted regarding returning individual research results and their reasons behind it, and gives specific examples from their policy documents and project consent materials. Finally, it suggests an oversight mechanism these and other international consortia can use to ensure that this important issue is addressed appropriately. (shrink)
This book is a rich blend of analyses by leading experts from various cultures and disciplines. A compact introduction to a complex field, it illustrates biotechnology's profound impact upon the environment and society. Moreover, it underscores the vital relevance of cultural values. This book empowers readers to more critically assess biotechnology's value and effectiveness within both specific cultural and global contexts.
Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, tissue banks and biobanks. (...) Examples of re-consent exercises are presented, triggers and non-triggers for re-consent discussed and the conflicting attitudes of commentators, participants and researchers highlighted. We acknowledge current practice and argue for a greater emphasis on ‘responsive autonomy,’ that goes beyond a one-time consent and encourages greater communication between the parties involved. A balance is needed between respecting participants' wishes on how they want their data and samples used and enabling effective research to proceed. (shrink)
BackgroundGenealogical research and ancestry testing are popular recreational activities but little is known about the impact of the use of these services on clients’ biological and social families. Ancestry databases are being enriched with self-reported data and data from deoxyribonucleic acid analyses, but also are being linked to other direct-to-consumer genetic testing and research databases. As both family history data and DNA can provide information on more than just the individual, we asked whether companies, as a part of the consent (...) process, were informing clients, and through them clients’ relatives, of the potential implications of the use and linkage of their personal data.MethodsWe used content analysis to analyse publically-available consent and informational materials provided to potential clients of ancestry and direct-to-consumer genetic testing companies to determine what consent is required, what risks associated with participation were highlighted, and whether the consent or notification of third parties was suggested or required.ResultsWe identified four categories of companies providing: 1) services based only on self-reported data, such as personal or family history; 2) services based only on DNA provided by the client; 3) services using both; and 4) services using both that also have a research component. The amount of information provided on the potential issues varied significantly across the categories of companies. ‘Traditional’ ancestry companies showed the greatest awareness of the implications for family members, while companies only asking for DNA focused solely on the client. While in some cases companies included text recommending clients inform their relatives, showing they recognised the issues, often it was located within lengthy terms and conditions or privacy statements that may not be read by potential clients.ConclusionsWe recommend that companies should make it clearer that clients should inform third parties about their plans to participate, that third parties’ data will be provided to companies, and that that data will be linked to other databases, thus raising privacy and issues on use of data. We also suggest investigating whether a ‘generational consent’ should be created that would include more than just the individual in decisions about participating in genetic investigations. (shrink)
Personal freedom, «living as you like», was a cardinal principal of Athens’ democracy and nearly always a daily reality for its citizens. Yet despite Athens’ ideologies and often extraordinary tolerance, what some consider significant violations of freedom also occurred; in particular, the Athenians reportedly prosecuted many intellectuals . All this has raised doubts about personal freedoms at Athens. Did these freedoms exist? Many deny it, including Isaiah Berlin in his famous essays On Liberty. Many modern democracies are guided by the (...) principle of the primacy of the individual over the state, and the paramount importance of protecting individual liberties. But among the Athenians the community came first. The thread linking Athenian violations of their deeply felt democratic ideology of «living as you like» was the priority of community interests. Drunkenness, wasting money, even doubting the gods were not regulated, if no one else was harmed. But the community came first. The Athenians punished those who harmed the polis. Private citizens were left free to live as they wished. (shrink)
Two cross-modal experiments provide partial support for O'Regan & Noë's (O&N's) claim that sensorimotor contingencies mediate perception. Differences in locating a target sound accompanied by a spatially disparate neutral light correlate with whether the two stimuli were perceived as spatially unified. This correlation suggests that internal representations are necessary for conscious perception, which may also mediate sensorimotor contingencies.
Philosophical perspectives are deeply relevant to psychiatric theorization, investigation, and practice. There is no better instance of this than the perennially vexing mind-body problem. This essay eschews reductionist, dualist, and identity-theory attempts to resolve this problem, and offers an ontology – “monistic dual-aspect interactionism” – for the biopsychosocial model. The profound clinical, scientific, and moral consequences of positions on the mind-body relation are examined. I prescribe a radically biological cure for psychiatry's – and all medicine's – chronic dogmatism and fragmentation.
Do the rich descriptions and narrative shapings of literature provide a valuable resource for readers, writers, philosophers, and everyday people to imagine and confront the ultimate questions of life? Do the human activities of storytelling and complex moral decision-making have a deep connection? What are the moral responsibilities of the artist, critic, and reader? What can religious perspectives—from Catholic to Protestant to Mormon—contribute to literary criticism? Thirty well known contributors reflect on these questions, including iterary theorists Marshall Gregory, James Phelan, (...) and Wayne Booth; philosophers Martha Nussbaum, Richard Hart, and Nina Rosenstand; and authors John Updike, Charles Johnson, Flannery O'Connor, and Bernard Malamud. Divided into four sections, with introductory matter and questions for discussion, this accessible anthology represents the most crucial work today exploring the interdisciplinary connections between literature, religion and philosophy. (shrink)