Center takes on pediatric bioethics

Some ethical issues pertain only to kids

There are some ethical issues that are universal — end of life decisions, competency, and refusal of treatment, to name a few. But the questions involved — and their answers — seem to carry added weight when the patients are children.

"It’s always been interesting to me that people who are comfortable with bioethics in adults, when faced with an identical issue in children, almost don’t know what to do with it," says Douglas Diekema, MD, MPH, director of the Center for Pediatric Bioethics at Children’s Hospital and Regional Medical Center in Seattle.

The center is in its infancy, with Diekema in the process of assembling a staff and getting some work coordinated and under way. Startup funding for the center, provided by Children’s Hospital and a federal grant, was announced in December.  

Some issues different, some the same

Many situations that prompt ethical questions occur in both adult and pediatric patients; others are unique to an age group.

"The primary differences can be seen when it comes to decision making," Diekema says. "In adults, the principle of autonomy plays a role.

"With a competent adult, you go to him or her to find out what they want. The equation changes when you’re talking 3-, 12-, or 17-year-olds," he continues.

A 3-year-old is absolutely dependent upon his/her parents for health care decisions. Problems arise when health care providers don’t think the parents are acting in the child’s best interests, Diekema points out.

On the other hand, while 17-year-olds are not considered legally competent to make major health care decisions on their own, they probably have some degree of knowledge and opinion on the course their health care should take.

"That child may not agree with what [the] parents want, and in those cases, you have a unique situation where you have a patient who can make decisions, but doesn’t have legal competency to," explains Diekema.

Genetic testing is another area of study that will be addressed through the center, he says, and it’s yet another example of ethical decisions that may be influenced by the age of the patient.

When screening for Huntington’s disease, an incurable, inherited, degenerative neuropsychiatric disorder that affects the body and mind, "the literature is fairly clear that if you screen an adult for Huntington’s, it’s really up to that person as to whether they want to know or not." But what if the patient being tested — for whom testing is being considered — is a child?

Symptoms of Huntington’s most commonly begin between the ages of 35 and 50, although onset may occur any time from childhood to old age.

"It’s a whole different question when you are talking about a 5-year-old or a newborn whose parents want the child screened," says Diekema. "You’re having the parents make that decision for a child, for a disorder that has no treatment, when there’s no medical reason for finding out."

If parents want a child tested, it can be argued that they’re robbing their child of a future opportunity to make that decision for him or herself, and saddling the child with the knowledge of bleak future health when there is currently nothing that can be done to avoid it.

"That’s a situation that’s relatively unique to pediatrics," Diekema observes.

Confidentiality is another area that can take on a different complexion when children are involved.

"It is an issue when an adolescent is in the hospital with a sexually transmitted disease, the parents are at her bedside, and [the patient] is telling us not to tell the parents why [the patient is] being treated," Diekema says, describing a particularly touchy position physicians and nurses might find themselves in. "[The patient is] a minor, but an adolescent minor, so what is the duty of confidentiality?"

A federal advisory group is expected at any time to recommend that all newborns in the United States be screened for 29 rare medical conditions, including sickle cell anemia and lesser-known diseases. The proposed screening has already sparked debate over how useful the findings would be, particularly when the conditions are untreatable.

Involvement in research at issue

Children’s involvement in clinical trials and other research has long been a contentious issue. Because children are physiologically and psychologically different from adults, their responses to medications, procedures, and devices will not be the same as adults’, and adults are not suitable stand-ins for children when the medications, procedures, and devices being studied are for use in children.

Because children are legally incapable of granting informed consent, their participation in studies is obtained by gaining parental permission and the assent of the child, to the extent his or her age allows the child to understand and agree.

A study published in The Journal of Clinical Ethics last year shows that when equipped with enough information, some adolescents age 13 to 16 can make health care decisions as well as adults — further muddying the lines clinicians use to determine who should decide treatment when the patient is an adolescent. Does the ability of an adolescent to decide weigh more than the fact that the adolescent still is a child and has parents who legally have the authority to decide?

Concentrated study

The center’s planners and director say it will fill a gap in the study of pediatric bioethics.

According to Treuman Katz, retiring president and CEO of Children’s Hospital, the Center for Pediatric Bioethics "will promote the highest standards of medical ethics and protections of patient rights in pediatric research and health care."

A key part of that goal will be centralizing some of the work being done now in pediatric medical ethics, Diekema points out.

"Right now, if you look around the country, there are dozens of people who are doing pediatric bioethics — either writing, speaking, or doing consulting — but there is no concentrated group that represents a study center for interdisciplinary collaboration and collegial work," he says.

Work at the center will be divided among four areas, Diekema continues. Primarily, the center will be the home of research of theoretical and empirical bioethics, some database studies, and some philosophical writing.

The center also will promote education, developing educational components that can be used at Washington as well as at other institutions. Another product of work at the center will be clinical services at Children’s Hospital.

The fourth area of concentration, and probably the last to be developed, will be an advocacy program to develop local and national policy on pediatric bioethics.

"With the educational component, there are obvious education applications for our own institution, but I hope that in a consulting role we will be able to share that regionally and, hopefully, nationally," says Diekema. "The clinical services to the hospital will expand what the hospital already has in terms of consultative services and the ethics committee."

The advocacy arm of the center will encompass monitoring of informed consent clinical testing, patient care, and research.

"I can also see a sort of public policy advocacy role, with some of that coming naturally out of research," he says.

The design of genetic therapies is another burgeoning field that will likely be researched at the center, including the issues that arise when clinical tests of genetic therapies include children.

There are other, peripheral topics that have not been paid enough attention but that the center might tackle, Diekema says, including the effects that being uninsured have on children and their lifelong health.

"There’s abundant data that shows that when kids don’t have insurance, they end up with worse health, which means they go into adulthood less equipped to compete in the marketplace and thrive as adults," he points out.

The interdisciplinary nature of bioethics makes the center a good jumping-off point for study of the direct and peripheral issues of pediatric bioethics, Diekema believes.

"This is a wonderful opportunity we have for very creative work," he says. "One of the things that make bioethics somewhat unique is that it really is an interdisciplinary endeavor, involving medical historians, physicians, nurses, researchers, and academics.

"The best work combines endeavors, and that’s where work in a center can be very valuable."


  • Douglas S. Diekema, MD, MPH, Director, Center for Pediatric Bioethics, Children’s Hospital Medical Center, Seattle. Phone (206) 987-2599. E-mail: