Salk Institute Turns to Ethics of Biotechnology

When scientists unravel the genetic signature of Alzheimer’s disease, will women be advised to choose abortion rather than bearing a child who will acquire the disease six decades or so after birth?

If a child is an asymptomatic carrier of the cystic fibrosis gene, when should his parents tell him so? Should his girlfriends all be screened to make sure he doesn’t end up marrying another carrier of the gene?

If a person has a gene that increases the chance of heart disease or cancer, should insurance companies nonetheless be required to sell him health or life insurance?

It is with such issues in mind that San Diego’s Salk Institute--which long has focused its attention mainly on the laboratory--has established a new center to consider the real-world issues that Salk labs are helping to create.

The center is unusual because bioethics centers generally are connected with medical schools, not basic research institutes. The move is being applauded, particularly since Salk labs are intimately involved in the massive federal project to map the entire human genetic structure.

“There are lots of arguments about whether (genetic) technology is qualitatively different than other advances in technology, like the steam engine, electricity or the computer. I think it is,” said Robert Bohrer, a professor at California Western School of Law who specializes in biotechnology issues.

“Each of those has caused us to change in a variety of ways and caused widespread social changes. But it is difficult to argue that any of them allowed for fundamental changes in the nature of humankind.”

That is just the world that genetic engineering is opening up, Bohrer contends.

“Right now there are cultures that deplorably practice sex selection, but we will be able to go much, much further in what traits we select in our children, with great consequences for what a definable human would be,” he says.

Already, parents can choose abortion for fetuses that have genes for Tay-Sachs disease, cystic fibrosis and other birth defects.

But if science discovers a gene that causes debilitating but not fatal conditions such as schizophrenia or alcoholism, should parents be offered the option of abortion then, too? What about the idea--very far off, but not unthinkable--that babies could be genetically reprogrammed to grow up taller or smarter?

None of these questions is easily answered, but they need to be addressed even while scientists continue to identify further genes, believes Nancy Wexler, who led the successful search for the Huntington’s disease gene.

Wexler, of Columbia University, chairs the Ethics, Legal and Social Issues Committee advising the U.S. Human Genome Project.

“When we named the group, we very explicitly expanded its title, because I think that people tend to think that all questions in genetics are ethical. And they’re not,” she said. “Many of the difficulties that we’re going to run into with the information that’s coming from the genome initiative is just how to get information to people in a usable fashion that doesn’t scare the life out of them, and that doesn’t subject them to discrimination.”

A bioethics center at a basic-science institute like Salk is an unusual but not unexpected result of the growth of such centers over the last quarter-century, said Ernle Young, co-director of the Stanford University Center for Biomedical Ethics. The first was the Hastings Center in New York, which was independent of a medical school, he said.

“More recently, medical centers across the country have begun to establish them,” Young said. “It seems to me that for Salk to do the same represents a logical extension of the idea. The idea is that each of us should build on our strengths.”

So far, the Salk Center for Bioethics is more an idea than a reality.

No faculty members have been hired, and its activities for the near future will be confined to three seminars at which scientists, policy-makers and others will discuss ethical issues in biological research.

“We don’t have anybody here sitting in a chair thinking about bioethics,” admitted Renato Dulbecco, president of the institute. “The Center for Bioethics at the moment is only the organization of a workshop, which we are doing now.”

Scheduled for today, the first Salk workshop will feature a panel of scientists, policy-makers and journalists discussing the Human Genome Project.

However, federal funding may soon be available to support the bioethics center. James Watson, who helped find the structure of DNA and now directs the genome project, has promised to spend 3% of the project’s funds on grants to consider its ethical and social implications. That would amount to about $3 million next year.

The genome project is mapping out the molecular structure of all the DNA, or deoxyribonucleic acid, in the genome. A DNA molecule consists of two long strands that twist around each other in corkscrew fashion, joined together by ladder-like rungs. DNA uses a few basic components, in varying sequences, to direct the physical characteristics and chemistry of every living thing.

If each chemical rung on the human DNA ladder were a page, the book would have 3 billion pages and 50,000 to 100,000 different chapters--each of them a gene for a specific human trait.

The more researchers find out about these genes, the closer comes the day when society will have to figure what kind of restrictions, if any, to put on the use of the information.

For law professor Bohrer, the fundamental issue is one of how much genetic diversity society will have--from brilliant thinkers to the mentally retarded or the mentally ill. He uses his own recent viewing of Shakespeare’s “Twelfth Night” as an example:

“The point is that Shakespeare, prior to the machine age and computers and everything, shared a vision and understanding of humanity that is as current and accurate now as it was then,” Bohrer said. “We can change all that with this technology. Not immediately, but over the course of the next 30 years--which is certainly not too far away for us to start thinking about it.”

In San Diego, gene-based technologies are used in basic research being done at institutions from UC San Diego to Scripps Research Institute, and in applied research at a wide variety of private biotech firms. UC San Diego doctors hope to do their first gene therapy experiment in the next two years.

So far only one of these institutions has singled out bioethics as a component in its molecular biology program. At UCSD, gene therapy researcher Dr. Theodore Friedmann holds an endowed chair in bioethics established a year ago. Friedmann will be a member of the Salk seminar panel Monday.

Dr. Glen Evans, lead researcher in the Salk’s $10-million portion of the genome project, thinks the Salk Institute is in a unique position to shed light on the subject.

“We were founded based on a scientific discovery that has vast social implications: Jonas Salk’s creation of the polio vaccine. It changed the way we lived,” Evans said.

“So the entire basis of this institute, as opposed to other places, has always been the interaction of basic science and scientific principles with human society. The institute recently has vastly emphasized the scientific aspects as opposed to the social aspects, but I think now . . . we’re perfectly placed to be a center for the ethical aspects as well.”

Dulbecco agrees that ethical and social issues raised by basic biological research need to be discussed. But he isn’t so sure that anyone has figured out the answers.

“What the real dangers are is not so easy to say,” Dulbecco said. “Because one can make constructions of the imagination, but are they reality?”

One concern that emerges quickly in these discussions is whether insurance companies will use genetic tests eventually as criteria for denying insurance policies or raising rates.

Increasingly, it is becoming apparent that some people are predisposed to big killers such as cancer or heart disease at the genetic level. How private will the results of genetic tests be? Can people be forced to take the tests as a condition of life or health insurance?

The real question is not whether genetic techniques will help people--they will--but whether they will also hurt them, suggested Dusty Miller, a gene therapy researcher at the Fred Hutchinson Cancer Research Center in Seattle.

For instance, he said, the boom in the last few years in drug testing by employers and others is a direct result of science’s ability to detect vanishingly small amounts of illicit drugs in urine.

No one considered at the time whether learning to do such analyses would have implications for society, he said. Yet, after the fact, Miller and others came to see the technology’s impact as an invasion of privacy.

Still, Miller thinks there’s no way to stop scientific progress.

“If you had said, ‘No, we don’t want to know how to detect low levels of chemicals in fluid,’ it probably wouldn’t have made any difference,” Miller said.

The solution, then, is for scientists at least to raise the issues and press policy-makers to resolve them ethically, he said.

The cost of new gene-based technologies also must be considered, Evans said.

“In fact, I think that gene therapy is actually one example of high-tech that probably will increase the cost of health care,” he said.

On the other hand, once the entire human genome is delineated, it will make it much easier for scientists to find the genes responsible for specific diseases, Evans said. Eventually, a physician might be able to do a single, combination blood test for dozens of conditions that now take expensive high-tech machinery to find.

“So from the point of view of the practicing physician, even though I think most people don’t realize this, the kind of information the Human Genome Project generates will decrease the cost of health care, I suspect, by orders of magnitude,” he said.

“The Human Genome Project: Ethical and Social Issues” runs from 9 a.m. to 5 p.m. today at the Salk Institute. Because of limited space, most participants are attending by invitation, but a few seats will be available to the public.

Funding for the seminar and two other bioethics workshops within the next two years will come from grants--$30,000 from Volvo America Corp. and $10,000 from a private, anonymous donor.