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Whitehead's efforts promote understanding of genome project

What responsibility do scientists have to help the public understand the potential ethical, legal and social consequences of their work?

Two years ago, an informal dinner conversation with local business leaders raised this question and precipitated an unexpected foray into public policy education for researchers at the Whitehead Institute for Biomedical Research.

The topic that evening was the Human Genome Project (HGP), the international effort to identify all of the 100,000 genes that make up a human being. The Whitehead Institute houses the largest component of the HGP sponsored by the US National Institutes of Health.

Whitehead Director Gerald Fink and his colleagues Drs. Eric Lander and David Page (director and associate director, respectively, of the Whitehead/MIT Center for Genome Research) were laying out the scientific goals of the HGP when several dinner guests began speculating about how the project would affect their lives and the lives of their children.

"They understood immediately that the identification of genes associated with cancer, heart disease, diabetes, Alzheimer's disease and other common conditions--as well as rarer disorders such as cystic fibrosis and Huntington's disease--would have a dramatic impact on society," Dr. Fink said. "They wanted to know how we could help others understand the impending changes in health care, insurance, employment, education and even the doctor-patient relationship."

"We heard the challenge in their questions," Dr. Page said. "Back at the Whitehead, we began discussing how we could reach out to policymakers. While scientists do not have any special rights or qualifications to set policy, we felt that we could share some vital information about the nature and pace of the changes ahead. The question was how to get the information to those who needed it," Dr. Page added.

"Part of the mandate of the US HGP is to address the social impact of human genome research through the working group known as ELSI (ethical, legal and social implications of human genome research), but most ELSI projects have focused on scholarly outcomes. We wanted to take a more direct approach--to give policymakers a head start in the decision-making process."

Under the leadership of Dr. Page, the Whitehead Institute took two steps.

A year ago, Public Affairs Director Eve Nichols invited Representative Carmen Buell, then House Chair of the Joint Committee on Health Care in the Massachusetts Legislature, and her staff to visit the Whitehead Genome Center.

"That meeting was a revelation for all of us," Dr. Page said. "Representative Buell and her staff told us repeatedly how rare it was for anyone to offer legislators information about a problem before it has reached crisis level. She had not been aware of the rapid pace of the Human Genome Project, nor what it would mean to have large numbers of DNA-based tests available to physicians, patients, insurers and employers.

At the same time, we realized that we were complete novices in the arena of state government, and that we had a great deal to learn if we were going to be effective in our outreach activities."

The second step in the Whitehead's new science policy project was the development of the Whitehead Task Force on Genetic Testing, Privacy and Public Policy, a joint venture with Harvard's Kennedy School of Government and the Eunice Kennedy Shriver Center for Mental Retardation. In addition to Whitehead faculty and staff, the task force includes Dr. Philip Reilly, executive director of the Shriver Center; Gregory Moore and Dacia Clayton of the law firm Ropes & Gray; John G. (Jack) McElwee, former CEO of John Hancock Mutual Life Insurance Company; Dr. David Hart and Megan Jones from the Kennedy School; Robin Blatt of the Massachusetts Department of Public Health, and Elliott Hillback, president and CEO of Integrated Genetics.

"We've also had tremendous input from the state legislature," Dr. Page said. "When Rep. Buell left the legislature to pursue other activities, Rep. John McDonough and Sen. Marc Pacheco, the chairs of the Joint Committee on Health Care, each assigned a staff member to work with us on the task force. They also co-sponsored a briefing on the Human Genome Project for other legislators and their staffs, and now they are beginning to develop a comprehensive package of legislation on the use of genetic information."

In addition to working with the state legislature, the Whitehead Task Force has conducted special briefings on the HGP for members of the attorney general's office and for key commissioners in the executive branch, including the commissioner of public health, the commissioner of insurance, the personnel administrator and the deputy commissioner of education.

The Task Force also sponsored a roundtable discussion on genetic testing and genetic privacy with consumer representatives and health care providers and participated in the State Legislative Science and Technology Project at the Kennedy School. In November, Drs. Page, Lander and Reilly will conduct a briefing for all Superior Court judges in Massachusetts.

"Everyone we've approached has been very enthusiastic about our proactive approach to science policy," Dr. Page said. "We believe we've had a positive impact on public discussion by giving legislators and others the language and tools they need to evaluate some very complex issues. We will continue to serve as an educational resource as Massachusetts policymakers begin to respond directly to today's revolution in human genetics."

A version of this article appeared in MIT Tech Talk on November 8, 1995.

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