PROJECT NARRATIVE The goal of the proposed research is to investigate how clinical genomic sequencing impacts families of pediatric patients. This research will develop an empirically informed framework of normative values important to families of pediatric patients, including ethical, legal, and social implications (ELSI), which will then be used to elicit preferences for features of sequencing from a nationally representative sample of parents in the US.
Puerto Ricans are especially at risk of experiencing distributive injustice, or the structural exclusion from participating in genetic research that could potentially benefit them.
This Pathway to Independence Award (K99/R00) investigates and leverages perspectives from members of the health-related private sector genomics industry, to develop guidance for improving approaches to social and ethical issues in the industry. It does so through in-depth qualitative analysis (interviews, cases studies, comparative analysis), scholarly normative analysis (drawing on theories from bioethics and business ethics), and a Delphi process of iterative questionnaires with industry stakeholders, aimed at strategizing concrete change regarding social obligations of the industry.
PROJECT NARRATIVE When Americans interact with everyday technology such as mobile applications and websites, they leave behind digital footprints that can reveal a great deal about individual health. The proposed research will define the emerging ?health-relevant digital footprint? and evaluate consumer preferences around use of information from inside and outside the health care system.
Project Narrative This study would be the first to develop an initial bioethics framework to meet a critical gap in biomedical data modeling activities, where the downstream consequences of developing data models without careful and comprehensive review of ethical issues can be severe?not least because poorly developed data models have the potential to impact adversely the health of individuals, groups, and communities.
This Pathway to Independence Award (K99/R00) investigates and leverages perspectives from members of the health-related private sector genomics industry, to develop guidance for improving approaches to social and ethical issues in the industry. It does so through in-depth qualitative analysis (interviews, cases studies, comparative analysis), scholarly normative analysis (drawing on theories from bioethics and business ethics), and a Delphi process of iterative questionnaires with industry stakeholders, aimed at strategizing concrete change regarding social obligations of the industry.
The Institute for Public Health Genetics (IPHG) offers research and training programs that provide the context for discoveries surrounding the impact of genetic and environmental factors on human and population health.
Genomic research is rapidly expanding our knowledge about the genetic contributors to health and disease. A broad range of health benefits will flow from this research, including tests to predict disease risk and guide drug use, innovative therapies, and improved understanding of the interactions between genetic and environmental contributors to health. However, the specific benefits will vary for different diseases and populations, influenced by the nature of the genetic and non-genetic contributors, and the availability and safety of therapeutic options.
The ethical, legal, and social issues (ELSI) underlying the development and implementation of state-sponsored birth cohort studies and their accompanying biobanks are complex and potentially volatile. Michigan and other states, such as Connecticut and California, are in the midst of investigating and deliberating on how to set up biobanks and there is a pressing need for practical ELSI research and guidelines for these historic initiatives.