Commentary: When Science Fiction Becomes Social Reality

Of all the worrisome scenarios the genetic age has conjured, none is more deeply embedded in the popular psyche than the Frankenstein myth, with its moral that dire consequences await the scientist who dares to play God. For at least 20 years, scientists and biotech entrepreneurs have dismissed the fears of man-made life as science fiction, saying that whole-mammal cloning was impossible and would be until well into the 21st century.

But when Dolly, the cloned sheep, preened for her first photographs last week, the public learned that all sorts of genetic mischief, including mammal cloning, in fact is quite possible. "The symbolic significance is greater than the real significance," says Barbara A. Koenig, director of the program on Genomics, Ethics & Society at Stanford University.

Koenig believes Dolly's near-term impact could be significant for couples unable to bear children. Many couples have shown how far they will go to get genetically related offspring rather than adopt an unrelated child. Some seem willing to bear any expense and undergo the most difficult and risky medical procedures. Given that desperation, they may try to find a scientist willing to experiment with cloning.

AMBIGUOUS RESULTS. For ethicists, this will only add to a plate already full of issues that biotechnology has already raised. In the biotech century, those questions will become even more urgent. Perhaps the most fundamental questions right now are these: Exactly what kind of medical knowledge can be gleaned from genetic information today? And what can be done with it?

The truth is that most genetic tests are inconclusive. The diagnoses they yield often show no more than a slightly increased or decreased risk of someone's getting a particular illness. A perfect example is breast cancer. A gene that increases the risk of breast cancer was recently identified, marking an important scientific breakthrough.

One of Koenig's current projects is to study the ethical implications of testing women for mutations in this gene, which appear in some breast cancer patients. "My main fear is the overuse and commercialization of diagnostic tests before we have enough information," she says. Finding mutations could lead women who aren't actually at high risk for breast cancer to seek mastectomies without proper medical justification, for example.

Right now, controversy is raging in Britain, where an association of insurers has announced that applicants for life insurance must disclose the results of any genetic tests they've taken. The association has also said that those results will affect premium costs and underwriting decisions. There have been calls for government intervention and fears that high-risk individuals who really should take these tests to help doctors plan their treatments will now avoid them.

It all hit home for Brit Stephen Frost, who not only must live with the unnerving knowledge that he has a 50-50 chance of developing Huntington's chorea--the best accuracy a test currently can provide--but who says his former employer, an insurer, made life so miserable for him that he had to quit his job once his diagnosis became known.

It doesn't help that on the research side the consideration of the bioethical questions has been spotty and halfhearted for years. President Clinton's call for a new group to study the ethics of cloning could lead to consideration of other research projects--such as research with viable human embryos.

At the more practical implementation level, insurance companies are at the front line today of the ethics controversy over genetic testing. But employers are close behind them. As biology tells us more and more about who we are and how we work, employers will want to know which of their workers are carrying genetic time bombs.

The problem is the genetic information available so far is incomplete and difficult to interpret. But even when much better information is avaliable, its misuse could pose a far greater threat than Frankenstein ever did.

    Before it's here, it's on the Bloomberg Terminal.