Dr. Troy Duster
Institute for the Study of Social Change
2420 Bowditch
University of California
Berkeley, CA 94720-5670
Phone: 510-642-0813
Fax: 510-642-8674
Email: nitrogn@socrates.berkeley.edu
Projects are approved by an IRB located at: University of California, Berkeley.
The approving IRB operates under a Multiple Project Assurance (MPA) recognized by DOE or by the Department of Health and Human Services (HHS).
MPA number of the IRB: M-1349
Number of Human Subjects Projects reported: 1
Project Identifier: UCB-92-ER61393
Project Title:
Pathways to Genetic Screening
Principal Investigator:
Dr. Troy Duster
Project started in: 1992
Project Funding Information:
Project did not receive funding in Fiscal Year 1997.
Project used human subjects in Fiscal Year 1997.
Explanation:
We are operating under a no-cost extension to October 31, 1997.
Funding Sources:
We are operating under a no-cost extension to October 31, 1997.
Project does not involve use of multiple protocols/subprojects.
Protocol/Subproject Identifier: ER61393
IRB Review:
Type of Review: Full Board
Most Recent Approval: August 20, 1997
IRB Approval Number: 97-8-60
Number of Human Subjects who participated in this project/protocol during
FY 1997 (10/1/96 - 9/30/97): 1
Type of Human Subjects Involvement:
The proliferation of genetic screening and testing is requiring increasing numbers of Americans to integrate genetic knowledge and interventions into their family life and personal experience. This study examines the social processes that occur as families at risk for two of the most common autosomal recessive diseases, sickle cell disease (SC) and cystic fibrosis (CF), encounter genetic testing. Since each of these diseases is found primarily in a different ethnic/racial group (CF in European Americans and SC in African Americans), this research will clarify the role of culture in integrating genetic testing into family life and reproductive planning, and will facilitate the development of culturally sensitive genetic services. A third type of genetic disorder, the thalassemias primarily affect Southeast Asian immigrants, although another risk group is from the Mediterranean Region. Thalassemias, like CF and SC, have a similar pattern of inheritance and raise similarly serious biomedical challenges and issues of information management. This study has expanded its original focus on CF and SC to include families at risk for the thalassemias.
The study gathers data by interviewing members of families in which a gene for CF, SC or thalassemia has been identified. Data collection consists primarily of focused interviews with individuals from families in which at least one member has been identified as having a genetic disorder (or trait). Index cases are identified in medical settings or in advocacy groups. Snowball sampling is used to recruit other family members. Interviews are tape recorded, transcribed, coded, and entered into a computerized data base. Analysis is conducted using a variety of qualitative methods including "grounded theory" and narrative analysis. This study does not involve exposing respondents to any substances. It elicits only verbal responses to questions. Records are kept in locked cabinets. In order to protect confidentiality they are identified and filed by number. The identity of respondents is never revealed in reports of research findings. The most significant risks to which individuals are exposed is the risk of inconvenience and the risk that discussion of sensitive topics may be uncomfortable to them. Respondents are informed that they have the right to have the tape recorder turned off or to withdraw from the interview at any time. They are compensated for their participation and for any incidental expenses they may incur with $20 in cash for individual interviews.