B.U. Bridge is published by the Boston University Office of University Relations.

Contact Us

Staff

Recent decoding of human genome prompts calls for caution

By Brian Fitzgerald

The decoding of most of the human DNA sequence is being compared in importance to the invention of the printing press and landing men on the moon. On June 26, scientists announced that they have pieced together a “rough draft” of the human genome, providing a scaffold of sequence across about 90 percent of the set of gene scripts in our cells that strongly influences health and illness.

Although the eventual closing of the gaps in the identification of the human genome is expected eventually to revolutionize medicine, the milestone is also prompting activists, legislators, and biotech organizations to urge caution. They are calling for quick action to protect the genetic privacy of individuals and to ban discrimination based on genes.

“It’s about time,” says BU School of Public Health Professor George Annas. “My colleagues, professors Leonard Glantz and Winnie [Patricia] Roche and I drafted a model federal privacy law for the ethical, legal, and social issues part of the U.S. Human Genome Project in 1995, and Congress should act on it.” Annas and Roche are professor and assistant professor, respectively, in SPH’s health law section. Glantz is associate dean of public health in SPH.

The push for genetic privacy laws is nothing new. For the past few years, in response to rapid advances in the science of genetics and its applications, there has been a wave of legislation promoting privacy protection. Indeed, genetic privacy bills have been passed in 30 states, but Massachusetts is not one of them. Several bills are pending in the Massachusetts House Committee on Science and Technology and the Ways and Means Committee, but there are concerns that moving too quickly might impede future research by scientists, says committee chairman Arthur Broadhurst (D-Methuen).

At the federal level, there is no law dealing with both privacy of genetic information and discrimination. At present, a bill cosponsored by Sen. Edward Kennedy (D-Mass.) and four other senators is stalled in a Republican-controlled committee. They complain that House Commerce Committee Chairman Rep. Thomas Bliley (R-Virginia) not only ignores their letters, but also claims that he’s never heard of anyone being discriminated against based on genetic information.

Is it reasonable to fear that people may be dropped by an insurance company or by an employer because of their genetic makeup? “Yes,” says Annas. “Although this is a discrimination issue, not a privacy issue. The much more important privacy issue involves the right not to have your genes tested. And if they are tested, it’s important to have the right to keep the information private — not shared with anyone — and to have the right to have both the records and the DNA sample itself destroyed after the test. In short, genetic testing must be a matter of personal choice, not a decision by government, industry, or medicine.”

The U.S. Department of Energy and the National Institutes of Health have devoted three to five percent of their annual Human Genome Project budgets toward studying the ethical, legal, and social issues surrounding the availability of gen-etic information. It has become the world’s largest bioethics program. But advocates say that discrimination on the basis of genetic makeup already exists, and that people are shying away from federal genetic trials because they’re afraid predictions of what illnesses they are prone to might come back to haunt them.

They cite the case of Terri Seargant, a Wilmington, N.C., woman who was diagnosed with a genetic disease that required treatment with an expensive drug. The 46-year-old former office manager, who is battling the same rare lung disorder that killed her brother, says she was coerced into submitting a resignation letter after her self-insured employer reviewed her medical bills of $3,800 a month. She filed a complaint with the Equal Em-ployment Opportunity Commis- sion under the Americans with Disabilities Act. Sarah Turner, 52, from Greenwich, Conn., claims she and her husband were denied life insurance several years ago because she has the same genetic disorder as Seargant.

The warnings are also coming from the scientific community. Dr. Francis Collins, the leader of the international team that has mapped most of the DNA information, says that “health insurance companies should never be able to discriminate against someone based on their genetic profile. We should vigorously strive to protect genetic confidentiality.”

However, Annas points out that for the time being, genetic testing will remain “relatively rare” until there are medical treatments that can cure or prevent the disease an individual is looking for in his or her genes. “Few of us want to know what diseases we might get if there is nothing we can do about them,” he says. “That’s why, in the near future, the testing will mostly be done on fetuses — and will inevitably increase the number of abortions.”

Is “playing God” too strong a term? Asserts Collins, “We have caught the first glimpse of our own instruction book, previously known only to God.” President Clinton, at a White House news conference, said, “Today we are learning the language in which God created life.”

Discussions on the ethical questions posed by the Human Genome Project have long been underway across the world. In fact, the NIH is giving grants to public policy makers in the exploration of the implications of genetic research. A biotechnology ethics seminar is part of BU’s informatics curriculum. And, for the past 10 years, BU has hosted an annual Health Law and Bio-ethics Conference that explores such issues.

The Human Genome Project, which was launched in 1990, was initiated in the 1980s by Charles DeLisi, then a director of the Department of Energy’s health and environmental research programs. He was dean of BU’s College of Engineering from 1990 to 1999, and now directs ENG’s informatics program. At last year’s Health Law and Bioethics Conference, DeLisi, who holds the Arthur G.B. Metcalf Professorship in Engineering, delivered a talk entitled, “Ethical Challenges in a Post-Genome Era.”

The next step in the Human Genome Project is achieving a high-quality DNA reference sequence by 2003. But scientists and ethicists both agree that steps also need to be taken to address the moral and legal implications of the project’s achievements thus far.

“We need an umbrella privacy law,” says Annas. “It’s got to require your personal authorization for anybody to work on your genome, to look at your DNA for anything.”

14 July 2000
Boston University
Office of University Relations