Purpose: Current genomic research policy calls for public data release with specific consent for data sharing.Because most clinical investigators are not responsible for and do not anticipate data broadcast few include information about data sharing in their informed consent process. Model language is therefore urgently needed and should be responsive to research participants' attitudes and judgments. The purpose of this study was to describe research participants' attitudes and judgments about data release and their preferences for varying levels of control over decision-making. Methods: Focus group sessions with patients and controls from a genetic study of epilepsy. Results: Despite wide variation in judgments, there was general interest in receiving information and making decisions about data sharing. Participants preferred multiple data sharing options, but were more likely to consent to public data release when given fewer options. For existing samples most participants felt that genomic information should not be publicly released without explicit consent from research participants. Conclusions:Specific information about data sharing ought to be included in the consent process for all genetic research. These participants desire multiple data release options, but the effect, if any, on consent to public release deserves further investigation. Genet Med 2008:10(1):46 -53.

A barrier to the development and refinement of ethics education in and across health professional schools is that there is not an agreed upon instrument or method for assessment in ethics education. The most widely used ethics education assessment instrument is the Defining Issues Test (DIT) I & II. This instrument is not specific to the health professions. But it has been modified for use in, and influenced the development of other instruments in, the health professions. The DIT contains certain philosophical assumptions ("Kohlbergian" or "neo-Kohlbergian") that have been criticized in recent years. It is also expensive for large institutions to use. The purpose of this article is to offer a rubric-which the authors have named the Health Professional Ethics Rubric-for the assessment of several learning outcomes related to ethics education in health science centers. This rubric is not open to the same philosophical critiques as the DIT and other such instruments. This rubric is also practical to use. This article includes the rubric being advocated, which was developed by faculty and administrators at a large academic health science center as a part of a campus-wide ethics education initiative. The process of developing the rubric is described, as well as certain limitations and plans for revision.

Studies have consistently shown that vaccination rates against human papillomavirus (HPV) lag far behind other adolescent vaccinations recommended at the same age, resulting in exposing adolescents to unnecessary future risk of infection, and genital and head and neck cancers. Studies also have demonstrated that a major barrier to vaccination is lack of a strong provider recommendation. Factors that providers offer for failing to give a strong recommendation range from perception that the child is not at risk or the need to explain that the vaccine is not mandated (lack of equity and justice) or respect for parental autonomy. We look at the issue through a different lens, and reframe the above viewpoint by describing how failing to make a strong recommendation means the provider is not meeting the four principles of medical ethics (justice, beneficence, non-maleficence and autonomy).

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