The potential benefits and harms of returning genomic results to children and their parents are matters of enduring controversy--especially genomic results for adult-onset conditions that are not medically actionable in childhood. Returning results for adult-onset conditions can spur life-saving preventive measures in the parents of affected children. However, there has been long-standing concern that children who receive a result for an adult-onset condition might experience negative psychosocial outcomes such as distress or altered family functioning.
From the passage of the country's first sterilization law in Indiana in 1907 until the 1960s approximately 60,000 people were sterilized based on eugenic criteria that sought to regulate the reproduction of the "unfit" and mentally deficient. California performed about 20,000, or one-third, of all documented sterilizations nationwide. Few empirical historical analyses of this practice are available. In 2007, while conducting historical research at the Department of Mental Health (now Department of State Hospitals) in Sacramento, Dr.
A large and highly heterogeneous group of individuals conducts genetic and genomic research outside of traditional corporate and academic settings. They can be an important source of innovation, but their activities largely take place beyond the purview of existing regulatory systems for promoting safe and ethical practices. Historically the gene-targeting technology available for non-traditional biology (NTB) experiments has been limited, and therefore they have attracted little regulatory attention.
The application of new computerized methods of data analysis to vast collections of medical, biological, and other data is emerging as a central feature of a broad vision of precision medicine (PM) in which systems based on artificial intelligence (AI) assist clinicians in treatment, diagnosis, or prognosis. The use of AI to analyze big data for clinical decision-making opens up a new domain for ELSI inquiry to address a possible future when the implications of genetics and genomics become embedded into algorithms, pervasive yet implicit and difficult to identify.
The state of knowledge regarding the human microbiome is advancing rapidly and a burgeoning new area of research and development is microbiome-based diagnostics. There is much that is not yet known about the implications of microbiome-based diagnostic or screening test results and it is possible that existing laws and regulations that did not contemplate these technological advancements are not adequate to address legal, regulatory, ethical and social concerns they raise.
Great strides are being made in identifying early signs that put people in a 'high risk state' for illnesses, enabling identification during what has been called a 'high risk state'. Individuals in a 'high-risk state' are starting to show signs of a disorder, but do not yet have the full disorder. At the same time, advances are being made in identifying genes associated with 'high-risk states'.
This K99/R00 Award is designed to generate scholarship and interventions to guide genomics companies towards more just practices. It does so through a five-year training and research project, which investigates perspectives from members of the genomics industry, and leverages them to inform normative analyses and identify feasible paths towards concrete change. The project addresses issues of price, access and industrial control, with a focus on the ethics of profit and social responsibility.
For nearly three decades, the National Human Genome Research Institute (NHGRI) has supported the study of the ethical, legal and social implications (ELSI) of genetic and genomic research for individuals, families and communities and supported the growth of a generation of ELSI researchers. ELSI research has developed into a multidisciplinary field that spans the humanities, social sciences, natural sciences, engineering, medicine and law.
Project Narrative The potential benefits and harms of returning genomic results to children and their parents are matters of enduring controversy?especially genomic results for adult-onset conditions that are not medically actionable in childhood. Empirical data to support either position in this controversy are, however, lacking.
Project Narrative. Advances in psychiatric, neurologic and behavioral (PNB) genetics have brought the prospect of predictive and diagnostic genomic testing for many PNB conditions closer to clinical application. The potential for such findings to profoundly affect core elements of personhood?including identity, perceived responsibilities, and life trajectories?makes it essential to understand the impact of such information on individuals and families.