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
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