From Deseret News archives:

Offspring in the 21st century

Enter the brave new world of genetics law

Published: Sunday, Sept. 19, 2004 12:04 a.m. MDT
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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?

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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.

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Judge Denise Lindberg, left, works in 3rd District Court, and Christine Durham is chief justice of the Utah Supreme Court

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