-
NIH Jul 15, 2003 | R01
A Framework for Disability Perspectives on HGP
Institution: University of Kansas, Lawrence
FOA Number: PA-00-133
Abstract
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. To address these issues, this research will identify the concerns and expectations of selected segments of the disability community, examine possible responses in policy and health care practice to address those concerns and expectations, and test a conceptual framework for creating and evaluating disability policy and practice, created in prior research, for its applicability to human genome issues affecting individuals with disabilities, their families, and their representatives. The study will address four key research questions. Question 1: What are the concerns and expectations of persons with disabilities, their families, and their representatives about human genetic research and technologies? Question 2: What are the sources, situations, timing, contexts, and potential impacts for each expectation and concern? Question 3: What ethical, legal/policy, and social responses, educational initiatives, and health-care delivery practices, whether theoretical, proposed, or currently available, might address these expectations and concerns? Question 4: To what extent is the Core Concepts of Disability Policy and Practice Conceptual Framework valid for the purpose of facilitating the creation and evaluation of ethical, legal/policy, and social responses, educational initiatives, and health-care delivery practices that respond to the expectations and concerns of members of the disability community about human genetic research and technologies.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG002935Start Date:
Jul 15, 2003End Date:
Jun 30, 2006PROJECT TERMS:
Attitude, behavioral /social science research tag, Clinical Research, Data Collection, developmental disease /disorder, Ethics, Ethnic group, family structure /dynamics, Female, functional /structural genomics, genetic techniques, health care policy, health care service, Health education, health related legal, health science research, health services research tag, human population genetics, human subject, Mental disorders, person with disability, socioeconomics