During the AIDS epidemic in the 1980s, it was crucial that providers take steps to protect patients by managing HIV with the perspective of ‘HIV exceptionalism’. However, in 2020, the social and historical barriers erected by this concept, as demonstrated in this patient’s case, are considerably impeding progress to end the epidemic. With significant medical advances in HIV treatment and prevention, the policies informed by HIV exceptionalism now paradoxically perpetuate stigma and inequities, particularly for people of colour. To improve overall (...) HIV care, the medical community must move past HIV exceptionalism by liberalising diagnostics, instituting clinician implicit bias training and advocating to fully decriminalise HIV non-disclosure. (shrink)

All of our information about the world is derived from the function of our senses, and thus they are the principal source of all our knowledge. This was recognized explicitly by early Greek philosophers, remained an important point of discussion for nineteenth‐century philosophers, and continues to be a key issue for present‐day philosophers, psychologists, and neuroscientists. It is a key issue in cognitive science because, by initiating the processes that store and evaluate information, sensory information transmission can be considered a (...) cognitive initiator. In a very real sense, who we are and how we see the world are the result of the experiences that are mediated by our sensory systems. These are some of the reasons why the study of sensory systems has occupied such a prominent place in modern cognitive neuroscience. (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.

"In the 12 case studies in this treasure of a book, various authors examine the critical, direction-finding moments in the work of such individuals as Charles Darwin, Jean Piaget, Robert Burns Woodward, William James, Anais Nin, and others." --Virginia Quarterly Review.

This volume contains two major manuscript notebooks of Jonathan Edwards—"Natural Philosophy" and "The Mind"—as well as a number of shorter manuscript writings connected with his scientific interests and philosophical development. Several of the shorter papers have not previously been published, notably Edwards’ letter on the "flying" spider, an essay on light rays, and a brief but important set of philosophical notes written near the end of his life. Wherever possible the works have been newly transcribed from manuscript originals. Wallace (...) Anderson has collected, edited, and presented them here in a thoroughly authentic and readable text. Each of the major works in this volume and each group of related writings are preceded by detailed discussion of manuscript sources and dates. In his introduction Anderson makes these the basis for a revised account of the chronology of Edwards’ early writings and a deeper investigation of their biographical and historical context. Also included in the introduction are a new appraisal of Edwards’ efforts and achievements in science and an analysis of the developmental of his philosophical views. Anderson concludes from his research that Edwards was an enthusiastic, though untrained, investigator in the Newtonian tradition and that he grappled with the major metaphysical problems raised by this tradition. The papers reveal with special clarity the fertile and inquiring mind of our leading eighteenth-century philosopher-theologian. _Wallace E. Anderson_ is associate professor of philosophy at Ohio State University. (shrink)

Background Dynamic consent has been proposed as a process through which participants and patients can gain more control over how their data and samples, donated for biomedical research, are used, resulting in greater trust in researchers. It is also a way to respond to evolving data protection frameworks and new legislation. Others argue that the broad consent currently used in biobank research is ethically robust. Little empirical research with cohort study participants has been published. This research investigated the participants’ opinions (...) of adding a dynamic consent interface to their existing study. Methods Adult participants in the Extended Cohort for E-health, Environment and DNA longitudinal cohort study who are members of the EXCEED Public and Participant Engagement Group were recruited. Four focus groups were conducted and analysed for thematic content. Discussion topics were derived from a review of the current literature on dynamic consent. Results Participants were in favour of many aspects of a dynamic consent interface, such as being able to update their information, add additional data to their records and choose withdrawal options. They were supportive provided it was simple to use and not intrusive. Participants expressed a markedly high level of trust in the study and its investigators and were unanimously happy with their current participation. No strong support was found for adding a dynamic consent interface to EXCEED. Conclusions Trust in the study researchers was the strongest theme found. Openness and good data security were needed to retain their trust. While happy to discuss dynamic consent, participants were satisfied with the current study arrangements. There were indications that changing the study might unnecessarily disturb their trust. This raised the question of whether there are contexts where dynamic consent is more appropriate than others. This study was limited by the small number of participants who were committed to the study and biased towards it. More research is needed to fully understand the potential impact of adding a dynamic consent interface to an existing cohort study. (shrink)

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)

Where research was once strictly confined to one laboratory or office, investigators now widely share and compare their plans, analyses, and results. With the advent of genomic knowledge, researchers are seeking to understand the genetics and genomics of complex human disease. They are combining their efforts into international consortia in order to take on problems that face individuals around the world, such as cancer and malaria — problems that are too large to solve by one country alone. These consortia bring (...) together diverse research groups from different parts of the world to focus on a common goal. Their projects may all focus on one disease or condition, but examine it from different perspectives and share the newly gained information with each other and the wider scientific community. (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)