West Harlem Environmental Action presents a national conference and community dialogue on: *** Human Genetics, Environment, and Communities of Color: Ethical and Social Implications *** Thursday September 20th, 2001 8:30 a.m. - 5:30 p.m. Columbia University Alfred Lerner Hall (115th & Broadway) New York City Featured speakers include: Troy Duster, Professor of Sociology, New York University Paul Steven Miller, Commissioner, Equal Employment Opportunity Commission Debra Harry, Indigenous Peoples Council on Biocolonialism Co-sponsors: the National Institute of Environmental Health Sciences (NIEHS), the NIEHS Center for Environmental Health at the Mailman School of Public Health (Columbia University), and the Harlem Health Promotion Center. For more information, to register, or to be placed on the conference mailing list, please go to www.weact.org, email [log in to unmask], or leave a phone message at (212) 961-1000 x.333. You may also use the registration form at the end of this email. **************************************************************************** The "decoding" of the human genome - the collective genetic make-up of human beings -- announced in June 2000 has been heralded as one of the major scientific breakthroughs in recent history, with the potential to usher in a new era of human health protection. Many concerns have arisen, however, about the potential for exploitation and misuse of this technological breakthrough. As the research and development of human genetics unfolds with increasing speed, do adequate structures exist for communities to address the ethical and social implications created by these new technologies? How will genetics research impact on communities of color, and how can we best inform and prepare ourselves to handle both the challenges and opportunities posed by this new knowledge? This national conference will bring together community advocates, policy makers, and scientists from across the country to educate one another and to answer these questions. Conference participants can expect to learn some of the science upon which genetics research is based, and participate in discussions around critical ethical, legal, and social implications of human genetics for communities and people of color and for environmental justice. **************************************************************************** PROGRAM 8:30 am: Registration & Continental Breakfast 9:00 am: Welcome: Regina Santella, PhD, Director, NIEHS Center for Environmental Health, and Peggy Shepard, Executive Director, West Harlem Environmental Action (WE ACT) 9:15: Introductory remarks: Kenneth Olden, PhD, Director, NIEHS "The Role of Gene-Environment Interaction in Health Disparities." 9:45: Keynote: Troy Duster, PhD, Professor of Sociology, New York University "Human Molecular Genetics and the Subject of Race: Contrasting the Rhetoric with the Practices in Law and Medicine" 10:30 Break 10:45 Plenary session: "Opportunities and Challenges of Genetics Research for Communities of Color" Paul Steven Miller, JD, Commissioner, Equal Employment Opportunity Commission Debra Harry, MA, Indigenous Peoples Council on Biocolonialism Charmaine Royal, PhD, National Human Genome Center at Howard University This panel will present an overview of both the opportunities and some specific ethical and social challenges posed by human genetics research for communities of color, including the role of genetics in disease causation, genetic reductionism, the meaning and implications of "race-based" genetics research, concerns surrounding potential discrimination in the workplace and with insurance, protection of privacy, and issues of informed consent and participation in genetics research. 12:00: Luncheon 1:00: Breakout sessions Part A A1) "What It's All About: Human Genetics 101 and Gene-Environment Interactions" This session will provide a basic overview of genetic science, focusing on the interaction between genes and the environment in the causation and treatment of disease, on the Environmental Genome Project and on toxicogenomics. speakers: Jose Morales, PhD Public Interest Biotechnology Monique Mansoura, PhD, National Human Genome Research Institute A2) "Genetic Testing on the Job? Genetics in the Workplace" Screening for genetic "predisposition" to occupational health hazards is already underway in some workplaces. This session will focus on the ethical and legal implications of genetic screening and monitoring in the workplace. The potential and pitfalls of categorizing workers into categories of "high-risk" vs. "low-risk" will be discussed, and a case study of the recent legal action against Burlington Northern Santa Fe Railroad will be presented. moderator: George Friedman-Jimenez, MD, Bellevue Occupational Clinic speakers: Paul Steven Miller, JD, Commissioner, Equal Employment Opportunity Commission Eula Bingham, PhD, University of Cincinnati Paul Schulte, PhD, National Institute of Occupational Safety & Health A3) "What Will This Test Tell Me? Genetic Testing, Genetic Counseling and Risk Communication" As the practice of medicine increases its ability to conduct genetic tests to determine individual or family risk for certain genetically influenced diseases, support structures are needed to ensure that this testing takes place in an ethically sound manner. These ethical implications and the unique needs of communities of color for genetic counseling will be discussed in this session, including a discussion on the need to increase representation of people of color in the field of genetic counseling. speakers: Vivan Ota Wang, PhD, Arizona State University Kwame Anyane-Yeboa, MD, Director of Clinical Genetics, Columbia University Ilana Mittman, MA, Johns Hopkins School of Public Health A4) "How Informed Can Consent Be? Participation of Communities and People of Color in Genetics Research" (first of two similar sessions, this session emphasizes the process of research) Various human genetics research projects are increasingly focusing on socially identifiable groups like communities of color or certain ethnic groups. The process of conducting research in communities of color raises a host of issues and challenges rooted in a historical context of distrust of biomedical research by communities of color. This session will explore questions like: What does "informed consent" mean for communities of color? How can both group rights and individual rights be respected during a genetics research project? What safeguards can be implemented to ensure that communities that are the "subjects" of research adequately benefit from this research? speakers: Kim Nickerson, PhD, Director, Minority Fellows Program, American Psychological Association Richard Sharp, PhD, NIEHS Patricia A. Marshall, PhD, Case Western Reserve University 3:00: Breakout sessions Part B B1) "Is it Genes or is it the Environment? Community Environmental Health and Genetics" This session will focus on the how community environmental health will be impacted by genetics research, including a discussion on the potential that genetic information has to redefine "susceptibility" to environmental exposures. Asthma will be presented as a case study of the interaction between genetics and environmental exposures. speakers: Jose Morales, PhD, Public Interest Biotechnology John Pappas, MD, New York University School of Medicine B2) "How Informed Can Consent Be? Participation of Communities and People of Color in Genetics Research" (second of two similar sessions, this session focuses on the potential use of genetics information to define group and individual identity) Various human genetics research projects are increasingly focusing on socially identifiable groups like communities of color or certain ethnic groups. The process of conducting research in communities of color raises a host of issues and challenges rooted in a historical context of distrust of biomedical research by communities of color. This session will explore questions like: What does "informed consent" mean for communities of color? How can both group rights and individual rights be respected during a genetics research project? What are the implications of the use of genetic information to define groups? What safeguards can be implemented to ensure that communities that are the "subjects" of research adequately benefit from this research? moderator: Sandra Soo-Jin Lee, PhD, Stanford University speakers: Charmaine Royal, National Human Genome Center at Howard University Vence Bonham, JD, Michigan State University Debra Harry, MA, Indigenous Peoples Council on Biocolonialism B3) "What Do People Really Think of This? Community Perceptions of Genetics Research" The first step to creating the policy infrastructure necessary to adequately address the ethical and social concerns around genetics research expressed by people of color and other communities is to create a space in which community residents can fully express those concerns. The results of focus groups conducted around the country will be presented. speakers: Tene Hamilton, MA, Tuskegee University Tina Harris, PhD (to be confirmed), University of Georgia Yvonne Lewis, Faith Access for Community & Economic Development Morris Foster, PhD, University of Oklahoma B4) "Who is Regulating Genetics? Legislative, Policy, and Judicial Responses to Genetics Research" The current state of policy initiatives for regulating various aspects of genetics research will be presented in this session, focusing on the prevention of discrimination in insurance and medical care, the protection of individual privacy, and intellectual property rights. speakers: Sophia Kohlemainen, JD, Council for Responsible Genetics Jonathan King, PhD, Massachusetts Institute of Technology Marcy Darnovsky, Exploratory Initiative on New Human Genetic Technologies 4:45: Plenary session: The Future of Human Genetics Research, Communities of Color, and Environmental Justice 5:30: Adjourn ____________________________________________________________________________ This conference is supported in part by the Ford Foundation, the Environmental Protection Agency, The California Endowment, the StarFire Fund of The Philanthropic Collaborative, Inc, and the Warsh/Mott Legacy. On Friday September 21st from 9 am to 5 pm there will be a symposium on Human Genetics and Environmental Justice, a forum for an invited group of environmental justice and other community advocates. ____________________________________________________________________________ Registration Information: There are four ways to register: 1) You can register directly through our web page at www.weact.org 2) You can also fill out the following information at the end of this email and sending it to [log in to unmask] 3) mail the registration form to Genetics Conference Registration c/o WE ACT 271 West 125th Street, Suite 303 New York, New York 10027 4) fax to (212) 961-1015 Please note that registration is not complete until registration fees have been received. CONFERENCE SCHOLARSHIP Information WE ACT has a limited amount of funding to support travel and lodging expenses for environmental justice and other community advocates. To apply for a scholarship, fill out the Scholarship application form only if you need assistance for travel, room and board, and/or conference dues. To be considered for a scholarship, you must fill out this form as fully as possible. This form can be downloaded at www.weact.org. We can also fax or mail the form to you if you send a request to [log in to unmask], or leave a message at (212) 961-1000 ext 333. PLEASE NOTE: IF YOU ARE APPLYING FOR A SCHOLARSHIP, REQUEST AND FILL OUT THE SCHOLARSHIP APPLICATION FORM. FOR ALL OTHER ATTENDEES, FILL OUT THE CONFERENCE REGISTRATION FORM BELOW: *** CONFERENCE REGISTRATION FORM *** REGISTRATION DEADLINE: Friday, August 31, 2001 The conference registration deadline is Friday, August 31, 2001. Early Registration Fee is $50.00 for General Registrants, $25.00 for Community Organizations, Student, and Low-Income Participants All fees must be received by that date. There is a late registration fee of $15 for general registrations, and a $5 late registration fee for community organizations, students, and low-income individuals after this date for registration at-the-door on the day of the conference. You may also register online to expedite the process. All payments must be received in full before the registration deadline in order to complete the registration process. See below for payment information. Send your registration fees as a check or money order payable to "WE ACT," and mail to the following address: Genetics Conference Registration c/o WE ACT 271 West 125th Street, Suite 303 New York, New York 10027 ** REGISTRATION IS NOT COMPLETE UNTIL YOUR FEES HAVE BEEN RECEIVED ** CONTACT INFORMATION: Prefix: Name: Organization: Address: Phone: Email: Fax: Website: REGISTRATION PAYMENTS ( ) $50.00 General Registrants ( ) $25.00 Community Organizations, Student, and Low-Income Participants (Must include a brief explanation on organizational letterhead, a copy of student ID, or a brief letter explaining your circumstances) Voluntary Contribution to help fund a scholarship Amount: $ SPECIFIC REQUIREMENTS ( ) I would like to request the use of equipment for Spanish translation during the conference. Please specify any special needs: Dietary Requirements: ________________________________________________________________ Disability Access / Needs: ________________________________________________________________ I heard about this conference through... ( ) WE ACT mailing ( ) WE ACT e-mail ( ) WE ACT website ( ) A friend / colleague ( ) Other: (please specify) _______________________________________ ______________________________________________ Swati R. Prakash Environmental Health Director West Harlem Environmental Action, Inc. (WE ACT) 271 West 125th Street, Suite 303 New York, New York 10027 E-Mail: [log in to unmask] Voice: (212) 961-1000, Ext. 315 Fax: (212) 961-1015 Web: www.WEACT.org ***************************************************** To post a message to the list, send your message to: mailto:[log in to unmask] To unsubscribe, receive the digest version of the listserve, or for any other administrative questions, send a message to Alex Gorman: mailto:[log in to unmask] All information shared on this list must be kept confidential unless you receive express permission from the author to share it with others.