Introduction to the Workshop
URLs Provided by Attendees
- Ethical, Legal, and Social Issues
The electronic form of this document may be cited in the following style:
Human Genome Program, U.S. Department of Energy, DOE Human Genome Program Contractor-Grantee Workshop IV, 1994.
Abstracts scanned from text submitted for November 1994 DOE Human Genome Program Contractor-Grantee Workshop. Inaccuracies have not been corrected.
International Conference Working Group: The Social Costs and Medical Benefits of Human Genetic Information
Betsy Fader, Executive Director
Student Pugwash USA, 1638 R Street, NW, Suite 32, Washington, DC 20009; Tel: (202) 328-6555 Fax: (202) 797-4664
Student Pugwash USA, a national, educational, non-profit organization, helps young people of diverse academic and ethnic backgrounds gain a better understanding of social and ethical issues raised by science and technological advancements in the following key areas: health and medicine, environment and energy resources, peace and global security, population and international development, and information/computer technologies. Student Pugwash USA's interactive, educational programs and conferences bring international, interdisciplinary groups of motivated students together with scientists, policy makers, members of academe, and industry leaders for examination of critical issues at the juncture of science, technology and society.
In June 1994, Student Pugwash USA conducted a week-long international conference focusing on science, technology and ethical responsibility. The Conference, entitled "Science and Technology for the 21st Century: Meeting the Needs of the Global Community", brought together approximately 90 college and university students and 65 eminent professionals from 25 different countries for intensive discussions on the role of science and technology in world affairs. Six different "working groups" were assembled for the weeklong event held at Johns Hopkins University in Baltimore, Maryland, with one working group focusing on the ethical, legal and social implications of the Human Genome Project. The working group raised the following key questions relating to the Human Genome Project, including:
- What effects will the genetic knowledge derived from the Human Genome Project have on access to insurance, jobs, and civil rights?
- What long-term impacts will the technologies associated with genetic research have upon society, public health, the global gene pool, and bioengineering?
- Is the Human Genome Initiative the most effective and equitable use of scarce scientific resources?
The Department of Energy (DOE)-supported working group, "The Social Costs and Medical Benefits of Human Genetic Information," included 13 students and 8 "seniors" (experts/resource people), each representing a range of international and academic backgrounds, experiences and perspectives. Among the "senior" participants of the working group, for example, were genetic researchers, genetic counselors, physicians, and ethicists. In advance of the International Conference, the student participants prepared original research papers on ethics and the use of genetic information, which then served as the focal point for discussion in the working group throughout the conference week. Upon the conclusion of the week, students presented a working group statement to the full conference community, including policy recommendations for the scientific community. Support from DOE is also being used to support the compilation of a student-authored, expert-edited educational resource, the Global Issues Guidebook. The Guidebook draws upon outstanding papers prepared for the International Conference, and will feature one section on the ethical, legal and social impacts of the Human Genome Project. Like the International Conference, the Guidebook will highlight the interdisciplinary nature of global issues, explore creative solutions for their resolution, and evaluate their impact on both society and the individual. Information contained in the Guidebook will be presented in a format which can be used as a guide in classroom or student group discussions. Following its publication in early 1995, over 500 copies will be distributed across the U.S. and internationally, in loose-leaf binder and electronic formats to allow for continual updating.