The Human Genome Project (HGP) is a source of hope and a cause for concern for people with disabilities and their families. It offers hope in the form of promising medical treatments and, in some cases, even permanent removal, amelioration, or prevention of impairment. Yet, the HGP also gives cause for concern that genetic research may result in genetic discrimination, violations of privacy, decreased social supports and legal protections, overly paternalistic beliefs and behaviors, or other ethical, legal, or social consequences that directly or indirectly diminish the quality of life of persons 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.
