Personalized genomic medicine (PGM) is a goal that currently unites a wide array of biomedical initiatives, and is promoted as a ‘new paradigm for healthcare’by its champions. Its promissory virtues include individualized diagnosis and risk prediction, more effective prevention and health promotion, and patient empowerment. Beyond overcoming scientific and technological hurdles to realizing PGM, proponents … Read more

Anticipating and addressing the ethical, legal, and social implications (ELSI) of scientific developments has been a key feature of the genomic research agenda (1–4). Research in genomics is advancing by developing common infrastructures and research platforms, open-access and sharing policies, and new forms of international collaborations (5–12). In this paper, we outline a proposal to … Read more

Society prizes the rapid translation of basic biological science into ways to prevent human illness. However, the premature rush to take murine epigenetic findings in these directions makes impossible demands on prospective parents and triggers serious social and ethical questions.

Return of individual research results from genomic studies is a hotly debated ethical issue in genomic research. However, the perspective of key stakeholders—institutional review board (IRB) professionals—has been missing from this dialogue. This study explores the positions and experiences of IRB members and staff regarding this issue. In-depth interviews with 31 IRB professionals at six … Read more

A decade after the completion of the Human Genome Project, the widespread appeal of personalized genomic medicine’s vision and potential virtues for health care remains compelling. Advocates argue that our current medical regime “is in crisis as it is expensive, reactive, inefficient, and focused largely on one size fits all treatments for events of late … Read more

Research on the ethical, legal, and social implications (ELSI) of human genomics has devoted significant attention to the research ethics issues that arise from genomic science as it moves through the translational process. Given the prominence of these issues in today’s debates over the state of research ethics overall, these studies are well positioned to … Read more

The United States, along with other nations and international organizations, has developed an elaborate system of ethical norms and legal rules to govern biomedical research using human subjects. These policies govern research that might provide direct health benefits to participants and research in which there is no prospect for participant health benefits. There has been … Read more

A flood of comparative genomic data is resulting in the identification of human lineage-specific (HLS) sequences. As apes are our closest evolutionary relatives, transgenic introduction of HLS sequences into these species has the greatest potential to produce ‘humanized’ phenotypes and also to illuminate the functions of these sequences. We argue that such transgenic apes would … Read more

One day in the spring of 2009, the Rules Committee of The University of Akron Board of Trustees made a small but significant addition to a new “Employee Background Review Policy” that the university administration had proposed. The policy, modeled on an Ohio law requiring criminal background checks for all K–12 public school employees in … Read more