This project will continue and expand the Prospective Huntington At Risk Observational Study (PHAROS). PHAROS is a collaborative effort involving 43 recruitment and evaluation centers in the US and Canada. Its goal is to recruit 1000 individuals who are at 50% risk to develop Huntington disease (HD). These are all individuals who have not undergone, nor do they plan to undergo genetic testing in which they will learn their test results.
The Mentored Scientist Development Award in Research Ethics will fulfill three main goals: 1) to obtain a broad and in-depth foundation in research ethics and to develop research skills in ethical reasoning and analysis in order to become a resource for those pursuing biomedical research; 2) to build a research program on the ethical implications of human genetic variation research for social distributive justice; and 3) to become an independent investigator in the field of research ethics upon the completion of this career development award.
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.
Genomic research is rapidly producing new opportunities for understanding disease biology, and promises to enhance health care and health outcomes significantly through improved strategies for prediction and prevention, targeted drug treatment, and innovative molecular-based therapies.
This proposal seeks to build on 4 years of funded work on the ethical, legal, and social implications (ELSI) of genetic research in American Indian and Alaska Native (AI/AN) communities. In the course of that work, questions of trust have emerged with unique salience as American Indian and Alaska Native community members have expressed concerns with abusive treatment by researchers whom they characterize as primarily interested in self advancement and who, it is argued, have returned little of value to these communities that suffer so disproportionately from health disparities.
One of the promises of genomic research is that information about a genetic disease or risk will increasingly provide the basis for screening and prevention to reduce morbidity and mortality. As a result, much of the meaningful medical action stemming from genetic information will take place under the auspices of primary care providers, underscoring the similarities rather than differences between genetic and other medical information.
Background: There is a growing awareness of family history as a risk factor for disease and the availability of genetic testing for inherited cancers continues to increase. However, effective, efficient resources for educating individuals about inherited cancer risk are lacking, especially in geographic areas that are underserved by genetics services. In particular, there is a dearth of educational resources for Hispanics on cancer genetics that are both culturally relevant and available in Spanish.
Emerging medical technologies are substantially improving our health care options, but often at considerable added cost. Cost-effectiveness and affordability are described as the fourth and fifth hurdles for new medical technologies, following the traditional three hurdles for licensing requirements: safety, efficacy, and quality. The Human Genome Project offers ample opportunity to improve human health through innovative genome-based technologies that have only recently become available.
Despite significant efforts, African Americans continue to experience excess rates of morbidity and mortality from all forms of cancer relative to individuals from other ethnic and racial groups. Research is now being conducted to the molecular basis of cancer through genetic-based studies and to translate this information into strategies for cancer detection, prevention, and treatment. African American reluctance to participate in cancer genetics research will significantly limit efforts to apply these approaches to address racial disparities in cancer outcomes.
Advances stemming from the Human Genome Project have prompted concerns about the general public's readiness to utilize this information to make informed health decisions. As a strategy to increase genetic literacy among the general public, tools are now available to enable individuals to record their family health history. However, little is known about whether the public is able to access the tools, understand how to use them, and apply the information by taking health protective actions, which can compromise the potential effectiveness of the tools.