• Members of the Havasupai Tribe file suit against Arizona State University claiming they were led to believe they were taking part in a medical test for predisposition for diabetes, but tribe members allege they also were being tested for such things as schizophrenia and inbreeding.

      Such is the brave new litigation of the brave new world of reproductive and genetic rights.

      Judges, often working with conflicting rulings written in a language best described as foreign, are feeling their way along a bewildering terrain of technological advances. Their interpretations are forming a whole new catalog of parental rights. There are huge financial stakes and, very often, enormous heartbreak.

      To say the law hasn't kept pace with multitude of advances in modern medicine — "test tube babies," gene therapy, possible cloning and genetic testing — is putting it mildly, say two Utah judges heavily involved in helping their counterparts around the country build a legal framework around our rights to individuality and reproduction.

      "For those of us who have done family law, we know how terrible people can be to each other and their children," said Christine Durham, chief justice of the Utah Supreme Court and one of the co-chairwomen of the Genome Justice Program for the the National Association of Women Judges. She is working locally with 3rd District Judge Denise Lindberg.

      The project's goal is to inform state and federal judges about the scientific advances and legal dilemmas that will be cropping up with greater regularity on court calendars.

"This is not an attempt to turn judges into geneticists," Durham said. "It's an effort to make them familiar with the vocabulary, not intimidated, and open to thinking hard about policy implications so they don't have to do all of that the first time in a pending case."

      Durham co-chaired the Western States Conference on Courts and the Challenge of Genetic Testing in 1998 held at Snowbird. She said she and others sense judges are "very hungry" for this kind of information.

      Lindberg also is interested in these topics and recently attended a "Genome Justice" seminar in Seattle. Another pilot program to be held in Phoenix is scheduled for April.

      Consider the complications that could arise if a baby ends up with five different "parents" — an egg donor, a sperm donor, a surrogate mother who carries and delivers the child and an infertile couple paying for everything and longing for a baby.

      That scenario could become even more complicated: What if the couple is getting divorced? Who gets custody of the baby?

      What's more, Lindberg said, courts are grappling with genetic testing that could have marvelous health benefits for many individuals but also present serious legal questions.

      One of many concerns is the potential for genetic labeling. "Are you going to be disadvantaged if you volunteer for testing and information from the testing could disclose some predisposition?" Lindberg asks.

      Another key issue is what happens to sensitive information about individuals — and specific populations.

      "Who has access to that information and for what uses?" Lindberg asks. "Once the genie is out of the bottle can you get it back? You can't."

      How will judges balance the rights of employers and health insurance firms with the rights of individuals? Will people be denied insurance because they've been found to have a genetic tendency to develop a certain ailment? Will they be denied employment? Will there be efforts to get individuals sterilized to avoid passing along "defective" genes?

Deseret Morning News graphic

      Beyond that are such not-so-far-fetched topics as human cloning.
      The United States is not immune to misuses of scientific discoveries. There are precedents in the United States of medical experiments or tests that have been deemed grotesque by many.

      Among them:

• The U.S. Public Health Institute between 1932-1972 conducted an experiment on 399 low-income black men in latter stages of syphilis. Researchers in what came to be called the "Tuskegee Syphilis Experiment" never told the men what disease they had or encouraged them to get medical care because the study results were intended to be gleaned from autopsies once the men died. As a result of the untreated syphilis, many study participants ended up deranged, paralyzed, blind or suffering from heart disease or other ailments.
• Researchers at the University of Iowa, in what some now call the "Monster Study," routinely verbally abused a group of orphans with normal speech in 1939 as part of a study to see whether psychological pressure would cause the children to start stuttering. Three study participants and the estates of three others filed suit against the university in 2003 seeking compensation for what participants termed a lifetime of emotional damage caused by the study.

While mapping the human genome has fascinated scientists, there hasn't always been such a keen interest in the ethical problems that could arise.

      "In the beginning, some people's eyes would glaze over," Durham said, referring to the notion that there might be specific concerns around vulnerable groups such as women and minorities.

     "When I first started working in this area, some of the other women and I said, 'We're concerned because we know in terms of medical research that race and gender issues get neglected.' Mainstream genetic-research people just said, 'What are you talking about? Genetics is genetics, science is science. What could this have to do with race or gender?' "

      These kinds of philosophical debates began to arise some years ago.

      The U.S. Human Genome Project, funded by Congress in 1990, provided money to the Department of Energy and the National Institutes of Health, with a portion of the funds earmarked for legal and ethical education. The rest of the funding was intended for mapping the human genome.

      Franklin Zweig of the Einstein Institute for Science, Health and the Courts got federal grant money to establish some of the original judicial education programs.

      In time, members of the National Association of Women Judges decided their organization would be a good one to establish a pilot program to look at the question of whether there could be special concerns and populations that should be examined.

      In the past few years, the National Association of Women Judges got money from EINSHAC to establish pilot projects that specifically address gender and race in these scientific fields.

      Now that a curriculum has been presented and evaluated, a second is under way and it, too, will be refined.

      Durham said she and others hope this will eventually produce a "template" educational program that can be used nationwide by judicial educators, court administrators and court leaders.

      Meanwhile, as judges learn more about scientific changes that are both disturbing and exhilarating, what about educating legislators who enact the laws that judges must enforce?