Since 1990, much of the genetic research being done has been coordinated through the Human Genome Project. This is a multi- billion dollar, project based in several research institutions, whose goal is map the entire human genome. By identifying the various genes responsible for human traits, it is hoped that genetic illnesses can be better understood and prevented. Furthermore, as it appears many illnesses are in part due to genetic susceptibility, many "non-genetic" diseases might be better understood.
Because of concerns about ethical and social implications
of such research, the Human Genome Project established a
program to study such ramifications. The following is a
recent update of this group's activities from the Human
Genome News and is available on gopher:
In the next message, we will conclude with an overview of
the various ethical implications of this research.
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From Dan's-Gopher Tue Jul 26 00:00:00 1994
Author : Drell Daniel
The DOE Ethical, Legal, and Social Issues (ELSI) Program,
administered by the Office of Health and Environmental Research
(OHER), aims to anticipate and study how individuals and society
will be affected by the large amounts of genetic data being generated
through the Human Genome Project. Three years ago, OHER narrowed its
ELSI focus to concentrate on genetic education, privacy and
confidentiality of personal genetic information, and genetics and
the workplace [see HGN 4(2), 1þ2 (July 1992) and 5(2), 3þ4
(July 1993)].
--New Projects--
At the University of Michigan Law School, Rebecca Eisenberg
is studying the role of patents in transferring technology generated
by the Human Genome Project to society at large Eisenberg will
review available literature; query industry, government, and
university sources about technology transfer; and explore several
specific cases to see what works best for rapidly moving new
technologies into the marketplace. The results of this study could
affect DOE policy far beyond the genome program.
--Continuing Projects--
Troy Duster's "Pathways to Genetic Screening: Patient
KnowledgeþPatient Practices" is being renewed for a 2-year term.
This project contrasts Caucasian understandings about cystic
fibrosis with those of African-Americans about sickle cell disease.
Early results suggest that communicating genetic information and
understanding immediate health implications vary with factors that
include social class, gender, and educational level. Duster also
reports that detailed information is best obtained through personal
contact and discussion in a familiar environment such as the home,
rather than through an impersonal survey or doctor's office visit.
--Potential Benefits vs Challenges--
The simple, persistent importance underlying ELSI studies is
the recognition that each person has a unique genome that both
identifies the individual and has predictive implications for
future health. An "ideal" or "perfect" genome does not exist, even
if such a concept could be defined. All genomes contain polymorphisms
that could severely and adversely affect health under different
circumstances or if not influenced or masked by other genes; this
information about the individual has value to other people and groups
who may have their own agendas. Potential benefits of human genome
research for the enhanced health and well-being of humankind are
very great, but the challenge is to manage this effort wisely and
carefully and, if possible, avoid some of the foreseeable problems.
[Daniel Drell, DOE OHER]
--
Jack P. Freer, MD
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This section is from the document '/.INDEX/HGN/sept-94-hgn.data'.
Subject: DOE ELSI Program Enters Fifth Year
Site : DOE OHER
Source : Human Genome News, September 1994; 6(3):10
Now entering its fifth year, the DOE ELSI Program added three
new projects and two continuing ones to its portfolio of sponsored
activities in FY 1994. To avoid unnecessary duplication of effort,
OHER collaborates closely on program oversight with the ELSI
Branch of the NIH National Center for Human Genome Research (NCHGR).
In concert with the NCHGR ELSI Branch, the DOE program
supported a recently released study by the Institute of Medicine
on a range of ELSI issues, with recommendations for informed
policies. Studies were also initiated on the implications of
large DNA-based databanks and accumulations of data, including
those under development by the Federal Bureau of Investigation,
the U.S. Army, certain commercial companies, and academic research
centers. Exhibits on genetics are being partially supported by DOE
at both the San Francisco Exploratorium and the Smithsonian's
Museum of American History.
Lee Hood, Valerie Logan, and Maynard Olson (University of
Washington, Seattle) have begun an innovative program in which
local high school students determine the sequence of STSs
(sequence tagged sites) from cloned human genomic DNA. In addition
to learning about human genetics, experiencing science firsthand,
and contributing to the Human Genome Project by submitting their
checked sequences to a DNA sequence database, the students will
also explore ethical, legal, and social implications of the project.
Insights gained through this experience may encourage some of them
to consider the possibility of a scientific career.
At California State University in Los Angeles, Margaret
Jefferson and Mary Ann Sesma are translating into Spanish the
Biological Sciences Curriculum Study module, "Mapping and
Sequencing the Human Genome: Science, Ethics, and Public Policy."
They will also introduce it to students in selected Los Angeles
high schools. A key element of this approach is to involve parents
so that cultural and family sensitivities and values can be
incorporated into the study of genetics. In a project that may
serve as a pilot for future curriculum development in other
subject areas, knowledge about the genome project is being made
available to a community not directly addressed by current
educational outreach efforts.
The Cold Spring Harbor DNA Learning Center, under director
Jan Witkowski, will continue for another year to hold workshops
for opinion leaders and public policymakers on genomics and its
implications for society. These workshops are aimed at educating
individuals who could assist in introducing Human Genome Project
information to society. Workshop attendees have included
representatives from the media, genetic support groups, law and
the courts, Congressional staff, state legislatures, government
and private agencies, policy analysis programs, labor unions, and
other organizations.
JFreer@ubmedb.buffalo.edu
as416@freenet.buffalo.edu