Lisa Nash, RN, a neonatal intensive care nurse from Denver, knew early on that there were problems with her pregnancy. But even after multiple ultrasounds and an amniocentesis, no one could tell her exactly what was wrong with her baby.

When Molly was born, her deformities became evident. She was missing both her thumbs, her right arm was shorter than her left and she had two heart malformations. Still, even after her birth, Molly had no diagnosis.

Nash and a co-worker carefully reviewed the book Smith's Recognizable Patterns of Human Malformations by Kenneth Lyons Jones, MD, and they identified three possible diagnoses for Molly. The most likely and final diagnosis was Fanconi's anemia (FA), a rare genetic condition that leads to aplastic anemia and bone marrow failure.

With the diagnosis of FA, Nash and her husband, Jack, began to research options to save their daughter's life. Molly would need a bone marrow transplant. An unrelated marrow donor carried only a 19 percent to 20 percent success rate. Providing the closest donor match for Molly meant the Nashes would need to have another child.

Unfortunately, the Nashes had a 25 percent chance of having another baby with FA. They did not want another child to experience what Molly was going through.

At an FA conference, the Nashes heard a physician say it might be possible to conceive with in vitro fertilization and test the embryos at eight cells for FA. He also said it may be possible to screen for embryos that had the same marrow as Molly.

Stem cell research, cloning, genetic research and embryonic screening are headline topics. As technology grows, nurses will find they encounter more patients with questions about what technology is available. Like the Nashes, these patients will be searching for options.

Behind the debate

With Molly becoming sicker and more dependent on blood transfusions to live, the Nashes had gone through four unsuccessful attempts at transplanting embryos that were both free of FA and matches to Molly's bone marrow. On the fifth attempt, Lisa became pregnant and gave birth to Adam, a healthy baby boy. Adam's stem cells were taken from the placenta and transfused into Molly, saving her life.

"I had been on bed rest for 24 weeks. We'd moved to a new state with a 7-day-old baby who had just been circumcised. We didn't know if our daughter was going to live or die and the media was in our face," Nash said. "People have to step back and say, 'If this were my child, would I be at the head of the line?' When my husband and I decided what to do, we didn't do it for the pope's approval or the world's approval or disapproval; we did it so Molly would have a brother or sister and outlive us."

The Nash family story demonstrates that behind every practice in health care that can be held up for ethical debate and scrutiny lies real families, facing real obstacles and trying to do what they believe is best. As technology grows, so does the field of bioethics.

Genetic testing

Patients at risk of transmitting a genetic disorder to a child now have several technological options. They may use prenatal diagnosis via amniocentesis, chorionic villus sampling and ultrasonography. They may choose to conceive a child through donor gametes and donor embryos like the Nashes, or they may use preimplantation genetic diagnosis. As testing options increase, nurses will need to know the treatments available and be able to respond to patients' inquiries.

Rebekah Hamilton, MSN, RN, a doctoral student at the University of Wisconsin-Madison, is doing research on predictive genetic testing. The practice may be used for parents considering conceiving or individuals looking for confirmation about their own genetic predispositions.

"Genetic testing creates a very different picture of an individual. You are testing the whole family. It certainly changes our concept of informed consent. Informed consent is based on autonomy and one person's right to know that their genetic future supersedes other family members' right not to know," Hamilton said.

There are misconceptions about genetics within the lay public and Hamilton believes that nurses need to be informed about the process of genetic research and know what is clinically available to patients. The steps individuals take after undergoing personal genetic testing are not always known. The ability to screen for genetic conditions exceeds the ability to treat these conditions.

"When patients ask questions about genetic testing and options, nurses need to have educated answers," Hamilton said.

Stem cell research

Stem cell research is a headline topic of late and one that elicits strong opinions. While few nurses work with stem cells, many RNs encounter questions about the potential treatments that may arise from stem cell research.

"Like many issues in medicine, some nurses are positive about this technology because they see the potential for impacting diseases such as Alzheimer's and Parkinson's in a positive way. Others are much more hesitant because the technology is seen as changing the nature of a human being and what this may mean for how we understand ourselves as people is very uncertain," said Joan Liaschenko, Ph.D., RN, associate professor at the University of Minnesota School of Nursing Center for Bioethics.

Stem cells are unique-they are "blank" cells that have the potential to develop into any type of cell in the body. Scientists harvest these cells before they become differentiated so they can coax the cell to grow into a specific type of cell. These cells could potentially be used to grow nerve cells to repair brains damaged by Alzheimer's or Parkinson's or to replace injured spinal cord cells.

In the case of Molly Nash, stem cells from Adam's placenta became Molly's bone marrow.

"Embryonic cells have two potentials. The first is to divide infinitely in a petri dish and the second is to make a specific type of cell," said Richard Furnaletto, Ph.D., MD.

"Embryonic cells can become many things. We know this for a fact because embryonic cells differentiate and create a human being. However, most adult stem cells can divide only 60 times and have already started to become a specific type of cell," said Furnaletto, who is scientific director of the Juvenile Diabetes Research Fund. The group supports both adult and embryonic stem cell research as the debate continues as to what types of cells perform best in research.

Cloning cells

Martha Ogburn, MS, RN, acting director of the Eastern Shore Pregnancy Center in Salisbury, Md., was so interested with the topic of cloning and fetal tissue that she provided commentary on the radio and in newspaper articles and wrote a medical thriller.

Ogburn believes that technology should not be used just because it is available.

"I was medically trained in a scientific arena and was not really aware of philosophy," she said. "Nurses need to be able to think through things and take arguments apart and decide whether the arguments are valid. Nurses need to do their homework, read and digest information and make it their own."

As the field of bioethics grows, nurses will need to develop strategies for approaching bioethical issues. Sister Mary Margaret Mooney, MSN, dean of nursing at Clarke College in Dubuque, Iowa, said, "Nurses need to develop a disciplined, intellectual approach to biotechnology issues. We need to be clear on our role in the decision-making process.

"Our society tends to be quick to make rules or to go to an extreme and say there are not rules regarding situations with which we are uncomfortable. We need to be clear on what value a particular rule is intended to protect."

Advances in technology will continue to change the way medicine is practiced and, inevitably, bioethical dilemmas will grow. In the case of the Nashes, through technology one life was saved and another was created.

But not all ethical dilemmas will have such a positive outcome.

"Nurses must always remember that the profession they have chosen is an ethical activity with a technical aspect," Mooney said. "The glamour of the technology must never be permitted to gloss over the value and dignity of the person as a person."

Contact Carol Lindsay at carol@lindsay.net.