<i>Background:</i> Advances in genomics may eventually lead to 'personalized genetic medicine,' yet the clinical utility of predictive testing for modest changes in risk is unclear. We explored interest in genetic testing for genes related to modest changes in breast cancer risk in women at moderate to high risk for breast cancer. <i>Methods:</i> Women (n = 105) with a negative breast biopsy and ≧1 relative with breast or ovarian cancer completed telephone surveys. We measured demographic and psychosocial variables and, following presentation of hypothetical scenarios of genetic tests for lower-penetrance breast cancer gene mutations, assessed interest in willingness to pay for and comprehension of test results. We used logistic regression models with generalized estimating equations to evaluate combinations of risk level, cost and behavioral modifiers. <i>Results:</i> Many women (77%) reported 'definite' interest in genetic testing, with greater interest in tests that conveyed more risk and cost less. Behavioral modifiers of risk (taking a vitamin; diet/exercise), having a regular physician, greater perceived benefits of genetic testing, and greater cancer worry also influenced interest. Most participants (63%) did not understand relative vs. absolute risk. Women with less understanding reported more cancer worry and greater willingness to pay for testing. <i>Conclusion:</i> Interest in genetic testing for mutations related to modest changes in risk was high, modified by both test and psychosocial factors. Findings highlight the need for education about benefits and risks of testing for mutations that convey modest changes in risk, particularly given the current lack of clinical validity/utility and availability of direct-to-consumer genetic testing.
Recently, legislative mandates worldwide are requiring systematic consideration of much larger numbers of chemicals. This necessitates more efficient and effective toxicity testing, as a basis to be more predictive in a risk assessment context. This in turn requires much more emphasis early in the design of test strategies on both potential exposure and mechanism or modes of toxicity and a resulting shift based on the latter, from hazard identification to hazard characterization in order to group substances and additionally inform development of predictive computational tools. It also requires a much better common understanding in the regulatory risk assessment community of the nature of appropriate information to inform consideration of mode of action and resulting implications for dose-response and ultimately, risk characterization. This requires a shift in focus from the previously principally qualitative considerations of toxicological science to the necessarily more predictive and quantitative focus of risk assessment and has implications for appropriate communication and training of risk assessors. Human relevance of mode of action frameworks continue to play a critical role in hypothesis generation and the systematic consideration of the weight of evidence supporting the use of mechanistic data in regulatory risk assessment. Framework analyses increase the transparency of delineation of the relative degrees of uncertainty associated with various options for consideration in dose-response and risk characterization for impacted populations. Framework analyses are also instrumental in acquiring transparency on critical data gaps that will further reduce uncertainty. As such, they force distinction of choices made on the basis of science policy versus those that are science judgment related, including reliance on default, based on erroneous premise that it is always health protective. The potential of these frameworks to increase consistency and transparency in decision making contributes to increase common ...
Pre-symptomatic genetic testing for late onset diseases is a modem method of conquering the ever-menacing unknown. Individuals and families at risk for hereditary illnesses are increasingly striking out into this new technology in the hopes of either ridding themselves of their worst fears or preparing for the future. Yet, being a pioneer in this powerful technology has meant that these individuals are often forced to negotiate the anxiety and stressors caused by the result on their own without the support of social work interventions. This paper will describe the personal and familial crises of five individuals who pre-symptomatically tested positive for Huntington's disease and how three specific social work interventions (individual and family counseling, peer support groups, and advocacy), could have been more helpful to these individuals and their family constellations.
AbstractHow music and speech evolved is a mystery. Several hypotheses on their origins, including one on their joint origins, have been put forward but rarely tested. Here we report and comment on the first experiment testing the hypothesis that speech and music bifurcated from a common system. We highlight strengths of the reported experiment, point out its relatedness to animal work, and suggest three alternative interpretations of its results. We conclude by sketching a future empirical programme extending this work.
In modern democracies, governmental transparency is thought to have great value. When it comes to addressing administrative corruption and mismanagement, many would agree with Justice Brandeis's observation that sunlight is the best disinfectant. Beyond this, many credit transparency with enabling meaningful citizen participation. But even though transparency appears highly correlated with successful governance in developed democracies, assumptions about administrative transparency have remained empirically untested. Testing effects of transparency would prove particularly helpful in developing democracies where transparency norms have not taken hold or only have done so slowly. In these contexts, does administrative transparency really create the sorts of benefits attributed to it? Transparency might grease the gears of developed democracies, but what good is grease when many of the gears seem to be broken or missing entirely? This Article presents empirical results from a first-of-its-kind field study that tested two major promises of administrative transparency in a developing democracy: that transparency increases public participation in government affairs and that it increases government accountability. To test these hypotheses, we used two randomized controlled trials. Surprisingly, we found transparency had no significant effect in almost any of our quantitative measurements, although our qualitative results suggested that when transparency interventions exposed corruption, some limited oversight could result. Our findings are particularly significant for developing democracies and show, at least in this context, that Justice Brandeis may have oversold the cleansing effects of transparency. A few rays of transparency shining light on government action do not disinfect the system and cure government corruption and mismanagement. Once corruption and mismanagement are identified, it takes effective government institutions and action from civil society to successfully act as a disinfectant.