Fast-changing world of genetics presents profound possibilities, theological dilemmas

PITTSBURGH -- Dr. Kenneth Culver, a physician and Presbyterian elder who helped conduct one of the first clinical trials on human beings involving gene therapy, sees genetics, in the not-so-distant future, as "changing every aspect of our lives."

But for all its technical complexity, its potential to transform the practice of medicine, and the tangle of ethical and moral questions that are wrapped around the scientific breakthroughs, genetic science does not, in Culver’s view, stand alone. He is trying to save lives. And he sees the hand of God, even in the untried territory, at work in the work he is doing.

That is not to say anything goes. At a conference in Pittsburgh called “What Does it Mean to Be Human,” an exploration of genetics and Christian faith, people raised questions about everything from couples using genetic testing to select embryos based on the sex or other characteristics they prefer to the potential abuses of human cloning.

They also acknowledged the profound implications of gene therapy for pastoral relationships — and some pastors came to this conference to get a better idea of what to say to people in their own congregations who are struggling with infertility, the devastation of genetically-transmitted diseases, end-of-life issues, and the complex, swirling world of what the new technology can offer.

But Culver, now executive director of pharmacogenetics for Novartis Pharmaceuticals Corp., and others at the conference also spoke of the cutting-edge realities to which many Americans are just beginning to pay attention. Among them: research teams announced in June that they had almost completed mapping of the human genome — the instructions for the 23 sets of chromosomes that serve as the blueprint for human hereditary material.

With that information, and with scientists working round-the-clock to find ways to use that genetic information, medical care will change dramatically. The general public may be most familiar with the uses of gene therapy in controversial cases — having heard, for example, of the Colorado couple who used in-vitro fertilization to conceive a second child whose embryo was selected because it provided a match needed to provide a potentially life-saving stem-cell transplant for the couple’s first child.

But what people may not realize is that it’s very likely that gene therapy also will be used to treat patients with diseases that occur much more frequently, such as heart disease, diabetes or cancer. “We worry because it involves our DNA,” said Dr. Allen Hogge, medical director of the Department of Genetics at Magee-Women’s Hospital in Pittsburgh. But gene therapy follows in the paths of other scientific techniques, such as the development of vaccines, which now are a widely accepted part of medical practice, Hogge said.

And genetic therapy has the potential, Culver said, to not only treat the symptoms of disease — such as controlling diabetes with insulin — but to try to attack and possibly correct the underlying cause of the disease itself.

A mountain of questions

Along with the potential for healing, however, comes a mountain of questions — including profound theological ones involving the nature of humanity and God’s role in creation. Do we have souls and what is the soul’s relation to the body? If we are genetically predisposed to certain illnesses, and perhaps to certain behaviors, to what extent are we responsible for our own actions? If we believe that life is holy and good, what ethical limitations does that impose on how we can manipulate it? How powerful should fallible, sinful humans be allowed to be?

“To be a creature of God is not to be an accident,” and cannot be reduced simply to physics, said Sondra Ely Wheeler, a United Methodist minister who teaches Christian ethics at Wesley Theological Seminary. God has the “sole and decisive role as creator,” and children “are not simply the products or projects of other people’s will — neither of scientists nor doctors nor would-be parents,” she said.

Wheeler also raised concerns about the prospect of a market-driven economy emerging from gene therapy. Who will decide, for example, who will be eligible for expensive and potentially life-saving forms of genetic treatment? And what if parents begin to make genetic decisions based not on factors that could save a child’s life, but simply on trying to “enhance” a child’s capabilities?

Will some parents try to “give our children every advantage” by screening embryos for genes that will produce children who are slender and attractive, and “why not intelligent and attractive as well?” Wheeler asked. Some deride as “science fiction” concerns that a parent might say “I will have a blonde, blue-eyed cello player, thank you very much,” Wheeler said. But other geneticists she’s talked to say “give us 10 years” and it will be possible.

‘God is moving beyond what we know . . .’

Participants at the conference — which was sponsored by the Office of Theology and Worship of the Presbyterian Church (U.S.A.), with assistance from the Center for Business, Religion and Public Life at Pittsburgh Seminary — also began to discuss how these issues will reverberate from the scientific laboratories out through congregations and communities and families.

Individuals at increased risk for developing certain diseases may have to choose, for example, whether to have genetic testing that could provide a clearer picture of their likelihood of developing that disease. There may be confidentiality concerns, and fears about economic and other implications if the person’s employer or insurance company learn the results of the test.

And people who must make choices — choices often filled with both medical implications and spiritual concerns — may turn to their pastors and congregations for both support and advice. They may come with theological questions — such as why has God allowed this to happen? What does the Bible say about these issues? What would God want me to do?

“The church has to be there, because medicine will not perceive it in that (spiritual) light,” said Dr. Nancy Copeland-Payton, a Presbyterian pastor from Sandpoint, Idaho, who also worked for 20 years as a physician. In a hospital, “they’re too busy.”

In the field of genetics, “God is moving beyond what we know or understand,” said Tim Roach, a pastor from Camp Hill, Pa. But “this is not something wild and crazy,” but increasingly something from real life. “Pastors need to be able to have a degree of understanding so we can counsel and walk with folks.”