A decision tool to guide the ethics review of a challenging breed of emerging genomic projects.

Recent projects conducted by the International Cancer Genome Consortium (ICGC) have raised the important issue of distinguishing quality assurance (QA) activities from research in the context of genomics. Research was historically defined as a systematic effort to expand a shared body of knowledge, whereas QA was defined as an effort to ascertain whether a specific project met desired standards. However, the two categories increasingly overlap due to advances in bioinformatics and the shift toward open science.

Promoting an ethic of engagement in pediatric palliative care research.

Background: This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC.

The future of genomic testing in primary care: the changing face of personalized medicine.

Primary care is recognized worldwide as a key component for improving health outcomes in the population. At the same time, healthcare systems are rapidly changing with increasing expectations from technological advances. Genomics is a major driver in changing how medicine is being practiced; however, the importance for primary care has been under-appreciated.