Essential elements of personalized medicine.

Objectives: Genomic information has been promoted as the basis for "personalized" health care. We considered the benefits provided by genomic testing in context of the concept of personalized medicine.

Materials And Methods: We evaluated current and potential uses of genomic testing in health care, using prostate cancer as an example, and considered their implications for individualizing or otherwise improving health care.

Recommendations for returning genomic incidental findings? We need to talk!

The American College of Medical Genetics and Genomics recently issued recommendations for reporting incidental findings from clinical whole-genome sequencing and whole-exome sequencing. The recommendations call for evaluating a specific set of genes as part of all whole-genome sequencing/whole-exome sequencing and reporting all pathogenic variants irrespective of patient age. The genes are associated with highly penetrant disorders for which treatment or prevention is available.

Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet Personal Health Record Pilot: qualitative study.

Background: Full sharing of the electronic health record with patients has been identified as an important opportunity to engage patients in their health and health care. The My HealtheVet Pilot, the initial personal health record of the US Department of Veterans Affairs, allowed patients and their delegates to view and download content in their electronic health record, including clinical notes, laboratory tests, and imaging reports.

Objective: A qualitative study with purposeful sampling sought to examine patients' views and experiences with reading their health records, including their clinical notes, online.

Genetic screening.

Current approaches to genetic screening include newborn screening to identify infants who would benefit from early treatment, reproductive genetic screening to assist reproductive decision making, and family history assessment to identify individuals who would benefit from additional prevention measures. Although the traditional goal of screening is to identify early disease or risk in order to implement preventive therapy, genetic screening has always included an atypical element-information relevant to reproductive decisions. New technologies offer increasingly comprehensive identification of genetic conditions and susceptibilities.

Ethical issues in identifying and recruiting participants for familial genetic research.

Family-based research is essential to understanding the genetic and environmental etiology of human disease. The success of family-based research often depends on investigators' ability to identify, recruit, and achieve a high participation rate among eligible family members. However, recruitment of family members raises ethical concerns due to the tension between protecting participants' privacy and promoting research quality, and guidelines for these activities are not well established.

'Collective fictions': similarities in reasons for accepting maternal serum alpha-fetoprotein screening among women of diverse ethnic and social class backgrounds.

We analyzed the decisions of an ethnically and socioeconomically diverse group of women to accept or refuse a prenatal diagnostic test. We found that how women were informed about the test and the kind of information they were given determined their decisions more than their ethnic or social class background. To explain this, we argue that the women and their health care providers created a 'collective fiction' which situated the testing within the domain of routine prenatal care and denied its central connection to selective abortion and its eugenic implications.