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Gene Tests Should Be Used with Caution in Kids (Reuters)...hypertension, Alzheimer`s disease, some kinds of colon and breast cancer, psychiatric conditions and rheumatoid that for phenylketonuria, a genetic disorder that can lead to brain damage without rapid intervention....- Jun 05 1:42 PM ET

Al Musella's Comments: (This is his personal views and are not necessarily the views of the Musella Foundation!)


Posted on: 06/05/2001

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Tuesday June 5 1:42 PM ET "Gene Tests Should Be Used with Caution in Kids"

Gene Tests Should Be Used with Caution in Kids

By Keith Mulvihill

NEW YORK (Reuters Health) - Now that scientists have completed sequencing the human genome, the number of gene tests is expected to explode--posing some thorny ethical issues, particularly when it comes to testing infants and children.

To address potential problems, the American Academy of Pediatrics (AAP) published a statement on Monday about the proper use of genetic testing of infants and children with an emphasis on protecting the privacy of this potentially vulnerable group.

"The public might be interested in learning that the Human Genome Project (news - web sites) will result in a large number of new genetic tests that might be available for use with children," said co-author of the guidelines, Dr. Jeffrey R. Botkin of the University of Utah in Salt Lake City, in an interview with Reuters Health. "We will be able to test for many more conditions before we have new treatments or preventions available," Botkin said.

Currently, many genetic tests, such as those routinely used now in newborn screening or for testing a sick child for a genetic condition, are relatively uncontroversial. Other kinds of genetic tests might be used to evaluate children for future illness or for their own reproductive risk when they are of childbearing age, Botkin explained. For example, researchers predict that there will soon be genetic tests to determine risk of heart disease, diabetes, stroke, hypertension, Alzheimer's disease (news - web sites), some kinds of colon and breast cancer, psychiatric conditions and rheumatoid arthritis.

"These kinds of tests are more ethically controversial because the balance of risks and benefits is uncertain," Botkin told Reuters Health.

Children could be at risk from such testing due to the psychological impact of finding out that they are likely to develop a certain illness in mid- to late-life. What's more, such tests could have a social impact, resulting in stigma and discrimination, he explained.

For example, a 16-year-old girl could discover she has a gene mutation that increases her lifetime risk of breast or ovarian cancer by 90%, Botkin said.

"How would this information change her self-perception?" he asked.

"Might this information lead to difficulty in employment later, or to challenges with finding a marriage partner, or change how she might choose to lead her life, perhaps leading to short-sighted, self-destructive behavior?" he stated.

"No one knows the answers to these questions so, in the absence of medical options for a 16-year-old woman with a gene mutation for cancer, the AAP's statement recommends that this kind of testing generally be delayed until adulthood," Botkin said.

As for tests that might be helpful in treating conditions in newborns and young children, the AAP recommends that more research be conducted on "informed consent" for parents. Informed consent is the understanding that a person is fully aware of the risks and benefits of a test or procedure before choosing to undergo that procedure.

In the case of infants, a parent would need to be fully informed as to the potential risks and benefits of a genetic test--such as that for cystic fibrosis--and then have the option to refuse the testing of their child. Such a test may reveal that a child is sick and could benefit from early treatment. However, a test may also reveal that a healthy newborn is actually a carrier of a genetic disease, although the mutated gene will never affect the child's health.

Currently, two states--Wyoming and Maryland--require informed consent for newborn screening, while 13 other states require that parents be informed about screening before it takes place. All states except South Dakota permit parents to refuse screening if they have moral or religious objections to it.

Some screening tests are routine, such as that for phenylketonuria, a genetic disorder that can lead to brain damage without rapid intervention. Others are routinely conducted only in some states, such as tests for cystic fibrosis, a genetic disorder in which children have problems with breathing and digestion due to a build-up of mucus in the body.

"The key question is whether informed consent would improve the programs by better educating parents about newborn screening, or impair the programs by reducing the number of children who are screened," Botkin noted.

"We believe informed consent may enhance the programs by encouraging parents to be more active participants in the screening process," he said.

Botkin stressed that "parents can best educate themselves by fostering dialogue with their physician."

When making a decision about any kind of testing, the key questions are: What will I be able to do with the results of this test and what are the risks of testing, including psychological and social risks?

"There are many conditions that run in families, and are known to exist without the need to have genetic testing to confirm this fact," said lead author Dr. Robert Nelson of the Children's Hospital of Pennsylvania and chairman of the AAP's Bioethics Committee.

"Unless there is some way to help a child based on the results of the test, do not have the test," Nelson advised.

If a test confirms a diagnosis that is suspected anyway, concerns about confidentiality exist about the medical information regardless of genetic testing, Nelson explained.

"The bottom line is that if you do not plan to do anything based on the information, do not have the test," Nelson told Reuters Health.

SOURCE: Pediatrics 2001;107:1451-1455.

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