Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, January 1998; 9:(1-2)
About 150 leaders of minority communities came together June 20-21, 1997, at the University of Maryland, Baltimore (UMB) to learn about the Human Genome Project. The meeting was organized by Carmen Nieves (Center for Minority Health Research, UMB) and Ray Zilinskas (UM Biotechnology Institute, College Park). Its goal was to (1) inform minority communities about the Human Genome Project by explaining its potential benefits and clarifying its possible ethical, legal, and social implications (ELSI); and (2) make the aspirations and interests of these communities known to genome project scientists and policymakers. This program grew from organizers' concerns about an information vacuum among minorities regarding the genome project and the possibility that suspicions will arise about the project's intent.
Minorities (specifically African-Americans, Native Americans, and Hispanic Americans) generally are under-represented among scientists involved in Human Genome Project research and its applications. Many believe that "the" human genome being sequenced contains genes primarily from Northern Europeans and, therefore, that findings will benefit mostly Caucasians. [See Editor's Note.]
Minorities also have a history of being under-represented in clinical trials involving treatment of inherited diseases --especially diabetes, hypertension, and heart disease, which are prevalent among these populations. This lack of participation may stem from the mistrust of scientific projects focusing on health. Most minorities know about the infamous Tuskegee Study of Untreated Syphilis in the Negro Male (1932-72), involuntary sterilization programs in state mental institutions during the 1920s and 1930s, and discrimination against African-Americans as a result of sickle-cell screening in the 1970s.
The meeting's major objective was to convey information to attendees, so most of the time was allocated to formal presentations followed by question-and-answer sessions. Some highlights follow.
The first speaker, Martha Krebs, director of the DOE Office of Energy Research, reviewed DOE's involvement in the genome project and discussed how people might become "responsible ancestors." She stated that "all of us, not just the scientists, have a responsibility to address the tough issues that modern science raises. We must take upon ourselves the charge to be responsible ancestors as we support and utilize the science of today, which undoubtedly impacts the children of tomorrow."
Karen Nelson (The Institute for Genomic Research) explained to the largely lay audience that alterations that can cause disease have been found in an estimated 5000 genes. Although the development of tools for diagnosing human diseases is likely to outpace new therapeutics, she said, scientists will learn how to use various interventions to prevent or treat many genetically linked diseases.
In his presentation, "The Genetics of Behavior and IQ," Jonathan Beckwith (Harvard University) argued that research has yet to provide convincing evidence for strong deterministic genetic influences on human behavior. (Genetic determinism emphasizes the role of genetics on behavior and minimizes the role of environment.) Beckwith noted that the "new, more sophisticated understanding of human genetics resulting from the Human Genome Project gives us an expanding picture of complexity that challenges the simplistic notions presented in The Bell Curve and similar works."
Fatimah Jackson [UM, College Park] presented a fervent discourse on the potential benefits and costs of the Human Genome Project. Jackson asked two central questions: "Will comprehensive molecular genetic testing be harmful to African-Americans and other groups that are under-represented among molecular genetic researchers and funders? Once initiated, will such testing be helpful to these groups?" She spoke of a history of "bad science" in which testing has been used as a tool of “coercion, subjugation, and oppression” against certain groups, as in the Tuskegee syphilis study, and warned against repeating the ethical and moral errors of the past. “It is essential that [minorities] be permitted to collaborate meaningfully in the development of hypotheses and research designs; collection, analysis, and evaluation of data; and development of subsequent policy initiatives.” She encouraged African-Americans and members of other minority groups to have more input into genome databases and data interpretation.
Jonathan Marks (Yale University) discussed three categories of ideas that often affect genetic research because they are strongly embedded in public consciousness. These ideas, stemming from "folk heredity," are racism (the assessment of individuals' worth based on properties stereotypically assigned to their groups), hereditarianism (the belief that innate variation is the root cause of specific observed differences), and essentialism (the tendency to ignore visible diversity in favor of an imaginary uniformity).
Robert F. Murray, Jr. (Howard University) stated that genetic screening can be to the patient's advantage by allowing early detection, intervention, and treatment. However, gathering information about susceptibility long before the disease is clinically evident makes screening socially sensitive and possibly dangerous. Hindrances to employment, health insurance, and professional advancement can be intensified. The past history of genetic screening (as, for example, in screening for sickle cell anemia) indicates that without certain protective measures, information may be used to stigmatize or discriminate against individuals, especially members of minority groups.
In his talk on "Economic Opportunities and Minorities," Arche McAdoo (UM Biotechnology Institute) pointed out that Maryland has the third-largest concentration of biotechnology companies in the United States and, therefore, the potential to become a major player in the industry. To ensure that all groups gain from economic opportunities, youths should be positioned to achieve the skills needed to become stakeholders and major players in biotechnology. This means that parents must take an interest in their children's education, making certain that it is of high quality and includes the necessary science for participation in the field.
A community empowerment model for genetic counseling was presented by Ilana Mittman (Howard University). She focused on designing culturally appropriate means to provide genetic services to Asians and Hispanics in San Francisco and to African-Americans and Russian immigrants in Baltimore. Mittman said that members of ethnic minorities face formidable cultural, financial, educational, and physical barriers to receiving medical services based on the new understanding of genetics. Often, she continued, they are either unable to access these services or face culturally insensitive encounters with the genetic-service delivery system.
Like other speakers before her, Mittman mentioned a lack of trust in healthcare providers and the low number of minorities in the medical genetics and genetic-counseling professions and in government agencies responsible for developing public policy in this area. She then presented a model program, conducted under the auspices of Howard University, that encourages minorities to enter the genetic-counseling field and genetic sciences in general.
In addition to formal presentations, one keynote address was presented each day by a political figure. Maryland's lieutenant governor, Kathleen Kennedy Townsend, spoke of the genome project's potential economic importance to Maryland and the measures needed to make certain its benefits are shared equitably by all sectors of society. Participants were impressed with her thorough understanding of the Human Genome Project and the ELSI issues it might engender.
Larry Young, Chairman of the State Senate Health Subcommittee, discussed how the Human Genome Project may come to benefit the health status of all. After having candidly admitted that until very recently he knew nothing about the project, he promised to inform the next session of the Maryland legislature of its existence and importance.
Formal presentations were followed by a panel discussion. The panel, which included two African-Americans, a Native American, two Asians, a Caucasian, and a Hispanic, served to broaden the meeting's scope by bringing up important ELSI concerns that had not been covered in formal presentations. As the conference organizers expected, the panel discussion led to a wide-ranging, impassioned debate involving many of the attendees.
Two breakout sessions were held to allow participants to discuss their concerns about ELSI issues generated by the genome project and what they wanted to do about them. Each group included scientists who acted as resource persons. The consensus was to organize a task force that will develop a plan for continuing involvement to influence the Human Genome Project's direction and ensure its equitable application.
Michael Carter (Maryland State Department of Health and Mental Hygiene) indicated that the conference was extremely useful as a communication device and that many attendees were very interested in following genome project developments and in ensuring that all groups benefit equally. He said the conference had led participants to think about equity, privacy, and other issues; realize that they should become involved; and plan to take the steps to do so.
Attendees departed with mixed feelings of apprehension and excitement. On the one hand, they perceived that although government agencies, scientists, and bioethicists have been involved in the genome project since 1986, minorities have not been sufficiently aware of the research and technological advances that will significantly affect how diseases are diagnosed and treated in the future. The concern is that these benefits will not be shared equitably. Furthermore, information generated by the genome project may be used by unscrupulous organizations to discriminate against persons who possess what are defined as less-than-optimal genetic profiles.
On the other hand, findings resulting from the Human Genome Project can significantly enhance the health status of all persons, including minorities. Thus, informed groups can act on genetic information to make certain their communities share equitably. [Carmen Nieves, University of Maryland, Baltimore, and Ray Zilinskas, University of Maryland, College Park]
The meeting was supported by the ELSI component of the DOE Human Genome Program, with supplementary funding from the NIH National Human Genome Research Institute. Local sponsoring organizations were the Center for Minority Health Research, University of Maryland (UM), Baltimore; and the Center for Public Issues in Biotechnology, UM Biotechnology Institute in College Park. Government officials, legislators, educators, attorneys, officers of community-based cultural and social organizations, and scientists were among the participants.
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v9n1).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.