My Year as 1999 ASHG President

Abstract

Upon our request, the Society has been admitted to full membership in FASEB (the Federation of American Societies of Experimental Biology), the nation's largest association of biomedical scientists. Made up of 19 societies, with a combined total of 63,000 members, FASEB has a strong voice on matters of legislative and public interest and has campaigned successfully for increased biomedical research funding. We have appointed ASHG representatives to the FASEB Board of Directors and to seven different committees dealing with research funding, public affairs, and science policy.In national debates about guidelines and regulations, many issues have come to the forefront and will continue to be addressed by the Society, its committees, and its members. These include the overhaul of the NIH peer-review system, the establishment of PubMed Central, the derivation and use of human pluripotent stem cells in research, the use of archived human tissues for research, federal oversight of genetic testing, and patenting of human genes and of genetic diagnostic tests. The protection of human subjects from research risks—including the protection of the privacy of genetic information collected as part of family studies—and issues of informed consent procedures for mentally disabled persons have caught public attention. With the formation of the Office of Human Research Protection (OHRP) under the Secretary of HHS—replacing the Office of Protection from Research Risks (OPRR) under the NIH Director—there will be increased scrutiny of informed-consent procedures and of the role of Institutional Review Boards. These developments are likely to have considerable impact on researchers in human genetics.Under John Carey, an Ad Hoc Committee on Consumer Issues has been formed of researchers and leaders of advocacy groups. With the support of ASHG, a workshop was held to address consumer issues surrounding participation in clinical genetic research. The combined voice of researchers and consumer advocates will be needed to ensure that the progress of research will not be impeded by—and will be conducted within the framework of—existing federal regulations. The ASHG Social Issues Committee, under Mark Rothstein, has developed a statement on Genetic Testing in Adoption that will soon be released. As Social Issue Committees of other genetics organizations (ACMG, NSGC, and ISONG) are dealing with similar topics, the Board strongly encouraged joint sessions and activities of the ASHG committee with these committees.To improve communication between the ASHG officers, the membership, and the public, a Communications Committee has been established by the Board to redesign our Web site, making it more visible, informative, and interactive. This effort should enable ASHG members to be informed of critical issues in a timely fashion and to act in influencing public policy. Active participation of the ASHG membership will be essential for some of these complex issues.With increasing globalization, the communication between human genetics societies around the world is facilitated by the formation of the International Federation of Human Genetics Societies (IFHGS). The Federation currently has three full members—the regional societies ASHG, ESHG (European Society of Human Genetics), and HGSA (Human Genetics Society of Australasia)—and over 30 national societies as corresponding members. As I am beginning a three-year term as President of the IFHGS, I look forward to expanding the activities of this global organization in the information age. The new IFHGS web site is http://www.faseb.org/genetics/ifhgs/index.html. Elaine Strass, the ASHG Executive Director, deserves recognition for her expert management of the Society's office in Bethesda and special gratitude for serving as IFHGS Executive Secretary as well.