In a new book, MIT’s Ethan Zuckerman asserts that we need to overcome the Internet’s sorting tendencies and create tools to make ourselves ‘digital cosmopolitans.’
David Page, chair of the Whitehead Institute Task Force on Genetic Testing, Privacy and Public Policy, has been appointed to a special legislative committee created to grapple with the state's role in managing the use and dissemination of genetic information.
The Special Committee on Genetic Information Policy brings together Massachusetts legislators and experts in the fields of genetics, ethics, law and health policy. The co-chairs of the Committee are Reps. Harriette Chandler (D-Worcester) and Jay Kaufman (D-Lexington).
Scientists at Whitehead have played leading roles in the Human Genome Project (HGP), the international effort to identify all of the 100,000 genes that make up a human being. The new legislative committee will gather information from a variety of sources, helping lawmakers make public policy decisions arising from rapidly increasing knowledge of individuals' genetic profiles that will result from the HGP.
"The information generated by the Human Genome Project will have an impact on health care, employment, education, insurance, reproductive decisions and even the relationship between physicians and patients," Dr. Page said. "The goal of the Whitehead Task Force has been to encourage broad public discussion about the changes ahead and to provide a resource for those in the community with specific questions about the scientific advances underlying those changes." Dr. Page is associate professor of biology and associate director of the Whitehead/MIT Center for Genome Research.
"As scientists, public responsibility means we need to say what the potential power of this technology is, alerting the people who control the legal system and making people aware of the potential problems," said Gerald Fink, director of the Whitehead Institute. "Doctors are going to have a lot more predictive information, and so are insurance companies and employers. People at Whitehead and MIT are performing an important public service in being proactive about this."
Rep. Kaufman said, "With improved diagnosis, treatment and prevention of human disease made possible by the mapping of the human genome, the benefits are clearly enormous. But along with that comes a real and pressing need to ensure safe and responsible use of genetic information."
The Special Committee on Genetic Information Policy grew out of a series of discussions co-sponsored by the Whitehead Institute Task Force on Genetic Testing, Privacy and Public Policy and Rep. John E. McDonough, House chair of the Joint Committee on Health Care, and Sen. Marc Pacheco, former Senate chair of the Health Care Committee (Tech Talk, November 8, 1995).
Eve Nichols, coordinator of the Whitehead Task Force, said the group's other outreach activities have included co-sponsoring an educational program for insurance executives with the Massachusetts Commissioner of Insurance in January, and conducting special briefings on the HGP for members of the attorney general's office and key state commissioners, as well as the state's Superior Court judges. The Whitehead Task Force also sponsored a roundtable discussion on genetic testing and genetic privacy with consumer representatives and health care providers. Future plans include a presentation in June titled "Genetic Testing: The New Legal Frontier," for the Northeast Regional Meeting of the American College of Trial Lawyers.
A version of this article appeared in MIT Tech Talk on March 6, 1996.