The overall goal is to study the licensing policies and practices of 24 academic institutions regarding their DNA-based patents. The proposed project is conceived as a pilot study that will test the feasibility of conducting a more comprehensive follow-up study of such policies and practices. Specific aims are as follows:
-provide a clear, concise definition of the phrase 'DNA-based patents';
-analyze DNA-based patents into subtypes, using categories that are useful for understanding the policies and practices under which they are commercialized;
The Human Genome Project (HGP) is a source of hope and a cause for concern for people with disabilities and their families. Few researchers have solicited the input of the disability community about the HGP or reviewed possible responses to their concerns and expectations. In particular, little is known about the 'grassroots' disability perspectives and, within the grassroots perspective, the views of underrepresented subgroups including women, minorities, and low-income families.
The grant will fund a working group of scholars in literature, film, and media studies to examine the representation of genetics in literary and popular culture. Throughout the twentieth century, numerous works of fiction, film, and popular culture have attempted to come to terms with advances in genetics. These diverse cultural works have had an enormous effect on the public perception of genetics. The misrepresentations of genetic science in many popular texts lead to mistaken assumptions and misguided pressures on policy makers.
Over the past decade researchers, institutions and research sponsors have engaged in various forms of discourse with minority and indigenous populations in the US and abroad. These "community consultations" are an increasingly common adjunct to genetics research, particularly for projects aiming to create a repository of tissues and information for use by multiple researchers, with numerous different protocols, over an extended time period. Millions of dollars are being spent on consultations.
The ultimate aim of genetic research is to improve human health and prevent disease. One key measure of success in translating new genetic knowledge into improved health will be the extent to which genomic medicine reduces existing health disparities. We propose to develop a CEER on "Genetics, Vulnerable Populations and Health Disparities" dedicated to examining the complex intersection of emerging genetic research and the persistent problem of health disparities through in_depth analysis of 3 key clinical areas: tobacco dependence, asthma, and diabetes.
The disability rights critique of prenatal testing asserts that genetic decision-making occurs in a context of misinformation and devaluation regarding the lives of people with genetic and/or prenatal diagnoses and that health professional attitudes reinforce this bias. This is a three-year project designed to explore the areas in which medical genetic advising is, or is not, informed by the lived experience of persons with genetic and/or prenatally diagnosable disabilities.
The proposed project seeks to analyze several of the conceptual, normative, and policy issues that will arise with the development of research in neurogenetics. Even though there have been some excellent studies examining the ethical and social implications of human behavioral genetics, research on neural and cognitive mechanisms will raise new issues that have not been adequately examined.
Phenylketonuria (PKU) has played a prominent role in the development of modern genetic medicine. Individuals with this rare inherited disease are unable to metabolize phenylalanine, an essential amino acid found in all dietary proteins. In the absence of treatment, ingested phenylalanine and its metabolites accumulate to toxic levels in blood and other tissues, leading to serious neuropsychological abnormalities, including profound mental retardation.
The purpose of the proposed investigation is to explore the phenomenon of Academic-Industry Relationships (AIRs) in the life-sciences, with an emphasis in the field of genetics. This study seeks to update previous work and explore how the prevalence and magnitude of AIRs have changed over the last two decades. Qualitative data from focus groups and personal interviews with investigators in research intensive medical schools and teaching hospitals will be used to refine existing and develop new survey items and hypotheses.
In 1907, Indiana implemented the world's first eugenic sterilization law. The upcoming centenary of this act provides an opportune time to evaluate the far-reaching significance of this event. The Indiana law, along with similar state legislation and activities at the local level, has left an extensive record resulting from public policy based on specific ideas about heredity. The name given to these activities, eugenics, is generally known, but research about it at the state and local level has only recently begun.