As part of their ongoing efforts to inform the public about environmental health and genetics, the LEGENDS project team was pleased to accept an invitation to speak April 28, 2001, at a training session (Midwest Chapters) of Zeta Phi Beta, a national sorority, dedicated to service and education of African Americans.
The invitation was made by Dr. Kathryn Malvern, Chairman and Project Director of the National Education Foundation (NEF) of Zeta Phi Beta. A total of approximately 100 Zetas participated in the training.
Malvern spoke first and then introduced the training session guests, Susan Vandale, LEGENDS team member, and LaVerne Mayfield, Director of the Greater Cincinnati Occupational Health Center, a labor-affiliated organization dedicated to worker health and safety that recently has become involved in activities to explore the environmental health concerns of African Americans and underserved populations in Cincinnati.
Glossary
of terms used in this report Ethical, legal and social issues (ELSI) Gene/environment interaction Health problems (diseases) produced by environmental exposures acting on specific genes Genetic discrimination
Genetic test Genetic screening Genetic susceptibility Genotype Human Genome Project Privacy Self-determination
Malvern asked the group of participants: "What do you know about the NEF and HGP Partnership?" Malvern went on to explain the objectives of the project: to raise the level of awareness, in minority communities, concerning human genome research and to offer background information on HGP.
The overall goal is to identify ethical, legal and social implications (ELSI) of this research that are important to minority communities and find avenues for more involvement of minorities. Among the topics to be addressed are human genome research and health problems, including among others, cancer and sickle cell anemia. The project will facilitate minority communities' input into HGP and help keep members of these communities updated on beneficial developments and, at the same time, help identify strategies for combating any negative consequences.
She then told the group about a NEF mini-grants program that will allow Zetas in all areas of the country to sponsor local HGP conferences, workshops, and seminars. She also mentioned a train-the-trainers program for these events that will be announced in the near future. She concluded by encouraging the Zetas to become more knowledgeable about the benefits and issues in human genome research and to use the training being offered in service to their local communities. Several Zetas gave their opinions as to the reasons for and the importance of the partnership.
Vandale described the next part of the training session as a focus group discussion on issues in environmental genetics and genetic testing. To encourage the discussion, she projected a short video segment, entitled "A Balancing Act" from the PBS Special: "A Question of Genes. The segment dealt with reasons why some members of racial and ethnic minorities have serious reservations about participating in screening programs for disease. The controversy is likely to be even greater when the programs involve screening for specific susceptibility genes such as the BRC1 and BRC2 (breast cancer) genes.
She raised the question: " What might be the point of view of an individual who may one day have to decide whether or not to have a genetic test?" She also asked the group: "What might be the view of racial/ethnic groups that may share a high prevalence of a gene-related disease?" Zetas responded with their opinions and several of them shared personal experiences involving circumstances in which they were called upon to make a decision as to whether or not to have a genetic test. The situations that the sisters mentioned brought out a number of ELSI dilemmas, including questions related to privacy and self-determination.
Mayfield commented that her Center's activities have been enhanced by a close collaboration with the Department of Environmental Health and the Center for Environmental Genetics at the University of Cincinnati. She pointed out how the GCOHC had partnered with the LEGENDS project in order to offer education to minority and underserved communities about environmental genetics and genetic testing. She spoke of the strong positive response that both workers and community groups have given to this type of education. She gave examples of participants calling and writing notes months after training to thank the organizers of the sessions and to report newsworthy happenings related to human genome research and ELSI.
She stated that she was pleased with the GCOHC/UC collaborative project and sees it growing into an effort that can have benefits, particularly in the African American Community, with regard to health care, civil rights and workers rights. She also commented that this program is in many ways parallel with the Signature Program for community education of Zeta Phi Beta. She concluded by congratulating the sorority on their HGP training program and expressed wishes for the success of Zeta's educational programs on human genome research.
Midwest Region Training Meeting, Zeta Phi Beta, Cleveland, Ohio, April 28, 2001
A series of controversial topics related to the uses that society currently makes, or potentially could make use of, with regard to information generated by genetic research and genetic testing.
Use of knowledge that a person has a genetic risk factor as the basis for refusing to hire or to be maintained on a specific job.
Laboratory procedures for scrutinizing a person's genetic make-up to determine if his/her genes might be linked to certain diseases.
The search, among apparently healthy persons, for a form of the gene that may cause disease, predisposition to disease, or may lead to disease in subsequent generations.
Having a gene (or genes) that is(are) associated with an additional risk of falling ill to some common disease or to an inherited disorder; oftentimes refers to an increased risk of a specific illness after contact with a particular environmental agent. Actual genetic information carried by an individual, both expressed and not expressed, as distinct from that which is observable or expressed.
An international research effort (led in the United States by the National Institutes of Health and the Department of Energy) aimed at identifying and ordering the full set of human genes. The individual's full control over certain personal matters guaranteed by law. Information about a person's genetic make-up is a privacy question. The capacity of living one's life consistent with one's own values, preferences, strengths, and needs (without interference by others for whatever reason)
Dr. Kathryn Malvern began the training session reminding the group that the Human Genome Project (HGP) has been Zeta Phi Beta's signature program since 1999. It was in that year that the Foundation sponsored its first two-day conference on HGP. Two such large conferences have now been held in New Orleans and Philadelphia and a third is planned for July, 2001, in Atlanta. To date, the Department of Energy, Merck Pharmaceuticals, and the March of Dimes have provided grants for these conferences and for the Zeta training program on HGP (of which this event was a start-up session).
Dr. Susan Vandale, the second panelist, introduced herself as a representative of the community outreach program of an NIEHS Environmental Health Research Center (Center for Environmental Genetics (CEG), University of Cincinnati). She said that the outreach area of the CEG has developed a curriculum for the public on Environmental Health and Genetics and seeks out collaborations with community partners in order to offer more effective educational programs. She identified five concepts that are important for the discussion of genetics in community groups: gene/environment interaction, genetic discrimination, genetic susceptibility, genome, and genotype (all defined in the glossary section at the beginning of the News Item).
Ms. LaVerne Mayfield was the third panelist. She told the group that she had been involved in worker health and safety training for the past 20 years, first with her local union at the Los Angeles Gas Company and later with the International Chemical Workers Union Council. In addition, for the past several years, she has been involved in local Cincinnati organizations that help to inform African Americans about ways of improving the quality of their lives through active civic participation and community education. When, in 1999, she was named Director of the Greater Cincinnati Occupational Health Center (GCOHC), she was able to outline a program that encompassed all these activities. The GCOHC is a large facility with ample indoor training space, housed in Swifton Commons, a shopping mall built in 1956 that now is undergoing city-sponsored urban renewal. Residents in this area are predominantly African American and represent the range of social classes.