Bioethics: toughest policy calls of era

Today, it's stem-cell research. But wait until tomorrow.

Scientists and lawmakers say a host of difficult biomedical issues are heading in the direction of Washington, toward a government ill-equipped to deal with them. The issues revolve primarily around genetic research, and raise challenging questions about equal access, patient privacy, and, most importantly - and ominously - human identity.

Just as former President Truman had to grapple with the implications of splitting the atom more than 50 years ago, so President Bush has had to weigh the promise and danger of unlocking the human cell. Stem-cell research, however, is just one small piece of what lies ahead, and Congress, too, will play a key role in the decisions.

Sen. Bill Frist (R) of Tennessee calls biomedical ethics "the" issue for lawmakers in this age. But "we are ill-equipped in Congress to make these decisions," says the senator, a former surgeon who is influential on health issues.

At a recent breakfast with reporters, the senator named several areas in need of government oversight, all having to do with genetic research. They include tests to find out whether people are predisposed to certain diseases, which raises some of the most fundamental privacy concerns.

Senate majority leader Tom Daschle (D) of South Dakota says he wants to make legislation regulating the dissemination of a person's genetic makeup "one of my highest priorities."

Mr. Bush recently came out in favor of laws that would prevent employers or insurance companies from discriminating against people because of their genetic makeup, but the issue has been stuck in the House for five years.

Perhaps more futuristic sounding, but in fact not so distant, are genetic treatments that would prevent and possibly cure disease, in part by permanently altering a person's genetic code.

That gets into tricky issues of cost and who could afford access to such treatments, as well as basic questions of identity, says Laurie Zoloth, a bioethicist at San Francisco State University and president of the American Society of Bioethics and Humanities.

Just to make things more complicated, Ms. Zoloth says, genetics is converging with two other technologies: artificial intelligence and so-called nanotechnology. Potentially, she says, minute chips could be inserted in the human body that could monitor biochemical reactions in the blood and send warnings back to a monitoring station.

That could work for something as innocent as cholesterol. But it could also be used to monitor human behavior, which raises questions of the "whole conceptualization of the self," she says.

Of course, there's a long history of the US government dealing with difficult, moral-scientific questions, the most famous surrounding decisions to build - and later use - the atomic bomb.

"In the advent of the nuclear age, there was knocking on the door of what's inside the atom," says a House aide who is closely tracking the stem-cell and other biomedical issues. "There was a huge debate, and to this day, there's still a view that [the bomb] is immoral, it's wrong." But scientific advancement isn't going to stop, and sometimes the best that government can do is pick among "bad choices," he says.

Still, even if many of the breakthroughs of today are complex and pose new challenges for lawmakers, lessons can be learned from the past. Senator Frist, for one, says the stem-cell debate reminds him of the fight over organ transplants in the 1980s.

Among other things, society at the time had to determine a definition for death, and it accepted so-called "brain death" as a viable state in which to remove an organ from one body for transplant in another.

Lawmakers then had to regulate and monitor the whole process, and important principles - such as advised consent, public openness through a national registry, and government oversight - were established that could be applied today.

But there are limits to what history can teach, especially when it comes to the frontiers of biomedicine. "Reproductive freedom comes in here, and that's different from transplant," says Jeffrey Kahn, a bioethicist at the University of Minnesota. "Some of the history will apply, but some of the issues cut across law and policy and ethics in ways that we need to look at with fresh eyes."

Regulators are groping for ways to deal with the march of science. Zoloth says Congress should get regular scientific briefings the way they do foreign-policy briefings.

Others would like to see a more formalized structure. Richard Land, president of the Southern Baptist Convention's Ethics and Religious Liberty Commission, says it's time to establish a national bioethics committee, similar to the Atomic Energy Commission.

An opponent of federal funding for stem cells, he wants a group of appointed experts "accountable to the peoples' representatives" to license and supervise research.

"I'll take my chances with a biotech commission [subject to political appointment] over a bunch of scientists in a lab being driven by a profit motive," says Mr. Land.