KEEP US INFORMED:
Please send us your comments on this issue, ideas for future issues, and news about your professional interests and accomplishments.

Al Dorof, Editor
adorof@brynmawr.edu
info@brynmawr.edu

©2006

Helping Patients Cope with Complexities

Ann Platt Walker
Ann Platt Walker '68

After Ann Platt Walker '68 graduated from Bryn Mawr College, she worked in an immunology laboratory at Harvard University prior to applying to medical school. At the same time she received her medical school acceptance, she and her husband learned she was pregnant. Walker opted to defer medical school and reapplied five years later, "naively thinking that if I got in once, I would get in again." But in the early 1970s, a woman who had taken time off to become a mother was not considered a viable candidate; medical schools rejected her the second time around.

Seeking a Plan B, Walker found her true calling in the then-nascent field of genetic counseling. She earned her master's degree from the genetic counseling graduate program at the University of California, Irvine, where she was in the program's third graduating class.

Expanding Specialty

Today, Walker is the director of the genetic counseling program and a professor of pediatrics in the Division of Human Genetics at UC-Irvine. Over the years, "I've certainly seen a lot of changes," she reflects. When she sought her first job, "not too many people knew what a genetic counselor was."

Today, Walker notes, the field has expanded beyond prenatal testing to include screening for hereditary cancers, late-onset neurodegenerative diseases, metabolic disorders and other diseases.

Graduates of UC-Irvine's program are engaged in a variety of activities beyond counseling, including coordination of clinical research studies and public-health programs. Recently, Walker notes, there has been a demand for genetic counselors in industry. "A lot of the biotech companies are looking for genetic counselors because they are able to translate complicated information so the public can understand it, and they bring the patient's perspective," she explains.

With each scientific advance, opportunities for interdisciplinary collaboration increase, Walker says. "There has always been a team approach within genetics, but the field has become more exogenously collaborative," she says. In the future, genetic counselors' expertise will be increasingly important in pharmacogenetics, behavioral genetics and public policy, among other areas, she predicts.

Ethical Dilemmas

The field of genetic counseling is "fraught with interesting ethical dilemmas," Walker says, which have increased as research has advanced.

For diseases that can be diagnosed but not yet treated, "a lot of the counseling centers on whether the patient even wants to take a genetic test or in some cases, to learn the results," Walker explains. The counselor-patient relationship does not end after results are presented, she says. "When I give someone information that is life-altering, I do a lot of telephone follow-up to make sure they are moving through the process of adjustment appropriately."

Some patients' reactions may seem counterintuitive, Walker says. "When the whole family is at risk for a disease like Huntington's, they may have lived for 30 or 40 years expecting that they will get it," she explains. "Sometimes, when they learn they are not going to get it, they feel like the 'odd man out' in the family. And there are other tricks that the mind plays, such as survivor guilt."

One of the field's challenges is to explain "complicated and sometimes not very definitive information." This is especially hard with non-native English speakers, Walker notes. "You have to be very concrete and use examples that are familiar to people so they can make informed decisions."

Patients' cultural beliefs, which may be unfamiliar to the practitioner, may be another barrier to understanding, Walker says. The family may believe their child's genetic abnormality resulted from a bad fright, excessive anger or even a solar or lunar eclipse during pregnancy. "You get a glimpse into how a society tries to make sense of why bad things happen," she says.

When there is no cure, the focus is different, Walker notes. "We see patients at a time when they often get abandoned by other professionals. The healing we can do comes through listening and talking," she says. "The impact on both parties emotionally is life-lasting." She notes that she still receives Christmas cards from patients she saw 20 years ago.

Professional Empowerment

Walker says her Bryn Mawr experience undoubtedly influenced her decision to enter a field largely populated by women. "I enjoy working with women and on women's issues, such as reproduction," she says. Her undergraduate training helped her succeed in a field that necessitates keeping up to date on more than 1,000 diseases. "A Bryn Mawr education gives one the ability to acquire information as needed, discipline oneself and be a pioneer," she says.

Bryn Mawr also gave her the self-confidence to succeed in an academic environment, Walker says. "It's unusual for someone with a master's degree to make full professor in a college of medicine," she notes. "My experience has been very empowering."

Walker advises students interested in genetic counseling to "do something else for a little while after they graduate," such as teaching or working with developmentally disabled people. "Having a little more life experience under their belt makes it easier to interact with patients in emotionally charged situations," she says. "One of the real rewards of this enterprise comes from seeing the grace with which people cope."

Barbara Spector writes on science and technology as well as business topics. She is the editor-in-chief of Family Business magazine and former editor of The Scientist.