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Culture, Society & Family Health & Medicine Student researchers

Study finds college students willing to donate genetic material to biobanks for research

Students further along in college are most comfortable with biobanks; reasons cited were altruism, desire to advance scientific research and to help find cures for diseases

A majority of college students is receptive to donating blood or other genetic material for scientific research, according to a new study from Southern Methodist University, Dallas.

In what appears to be the first study to gauge college students’ willingness to donate to a genetic biobank, the study surveyed 250 male and female undergraduate and graduate students.

Among those surveyed, 64 percent said they were willing to donate to a biobank, said study author Olivia Adolphson. Students filled out a two-page survey with 18 questions designed to assess their willingness to participate in a biobank, an archive of blood and tissue samples donated by individuals for the purpose of genetic research.

Student reasons include altruism, while barriers were privacy and lack of time
“Overall I found that my sample was very willing to participate in a biobank,” said Adolphson, an undergraduate psychology researcher at SMU. “The reasons cited were altruism — people want to help others — as well as to advance scientific research and to help find cures. The barriers were concerns about privacy, lack of time, lack of interest and lack of knowledge.”

Also from the study, students with a family health history of cancer, heart disease, high blood pressure, Alzheimer’s, diabetes and other diseases were not more motivated than other students to donate to a biobank, Adolphson said.

Adolphson has been invited to present two posters on her study, “College Students’ Perceptions of Genetic Biobanking,” in April at the 33rd Annual Meeting and Scientific Sessions of the Society of Behavioral Medicine in New Orleans.

First study of its kind to look at college students in the United States
“This appears to be the first study to gauge college students’ willingness to donate to a genetic biobank,” said licensed clinical psychologist and the study’s principal investigator Georita Frierson, an SMU assistant professor and health behaviors expert.

Of the students surveyed, 73 percent self-identified as white, while 27 percent self-identified as an ethnic minority. Before being given a description of a genetic biobank, 36 percent said they’d heard of the term. After being informed, 64 percent said they were willing to participate.

“Overall I found that the students who were more educated, the seniors, were more familiar with the concept of a biobank, and they were also more comfortable with it,” Adolphson said. “So we think education plays a role in acceptance.”

The research indicates that the medical community should do more to inform people about biobanks, Adolphson said.

Biobanks should educate people to familiarize them with concept
“The biobank community needs to educate people. And they need to use simple language that isn’t intimidating, because lack of knowledge is a big barrier,” she said. “From this research we saw that younger people are going to be willing to participate, because they are open-minded about the concept of research.”

Adolphson’s research followed a larger study by Frierson, which surveyed 135 adult Dallas-area residents who also attended one of Frierson’s 28 focus groups on the subject of biobanks. That study found that 81 percent of the participants had never heard of biobanking. Before the educational focus groups, 64 percent said they would participate in a biobank. After focus groups, that number significantly jumped to 90 percent, Frierson said. — Margaret Allen

SMU is a nationally ranked private university in Dallas founded 100 years ago. Today, SMU enrolls nearly 11,000 students who benefit from the academic opportunities and international reach of seven degree-granting schools. For more information see www.smu.edu.

SMU has an uplink facility located on campus for live TV, radio, or online interviews. To speak with an SMU expert or book an SMU guest in the studio, call SMU News & Communications at 214-768-7650.

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Culture, Society & Family Health & Medicine Mind & Brain Videos

Pilot study looks at women with rare Triple Negative breast cancer, which often strikes young women, minorities

Pilot study looking at stress, anxiety of aggressive breast cancer striking young minorities

When an aggressive form of breast cancer strikes a young woman, what kind of stress, anxiety and other psychological and social challenges does she face?

That question hasn’t been answered in the published psychological cancer literature, but a new pilot study just launched is gathering data to change that, according to psychologist Georita M. Frierson at SMU.

The two-year study will survey up to 60 women recently diagnosed with an aggressive form of breast cancer that typically strikes younger women under 40, mostly African-American or Hispanic, or those who test positive for a mutation of the human gene that suppresses tumors, BRCA1.

Known as Triple Negative Breast Cancer, this unconventional subtype categorized as “nonhormonal” strikes 10 to 20 percent of women diagnosed with breast cancer.

The study is probing patients’ stress, anxiety and concerns about the psychological and social hurdles they face, said Frierson, principal investigator. SMU is collaborating on the Triple Negative study with the University of Texas Southwestern Simmons Cancer Center, a National Cancer Institute-designated cancer center.

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“We don’t know anything about this population psychologically,” said Frierson, an expert in behavioral health psychology and an assistant professor in the SMU Department of Psychology. “But based on this study, for any of their concerns we could tailor a psychological intervention to help other women like the women in my pilot. These women will be our pioneers in the psychological area to help their sisters that may have Triple Negative in the future.”

For younger, minority women: Different cancer, different challenges
Triple Negative patients face far different challenges than women with traditional hormonal-type breast cancer, whose psychological and social challenges have been widely examined in the published psychological cancer literature, Frierson said. Traditional hormonal-type patients are typically over age 50, in a later career phase, raising their families, and probably have peers who may be struggling with a chronic illness.

In contrast, a Triple Negative patient is young, maybe mid-career, may not have started a family, and her peers are largely healthy and active. Because Triple Negative is a very aggressive cancer, Triple Negative patients can have lower survival rates and higher recurrence rates, and the medical treatment is different from hormonal-type cancer, Frierson said. For example, while chemotherapy can be an effective treatment for the Triple Negative patient, it can lead to short-term menopause, which may or may not be reversible, she said.

Breast cancer is the second leading cause of cancer death among women after lung cancer. In 2010, there were more than 192,300 new breast cancer cases in the United States, with more than 40,000 deaths.

The subtype is called Triple Negative because it tests negative for all three of the hormone receptors that fuel many types of breast cancer: estrogen, progesterone and human epidermal receptor 2. Some traditional breast cancer hormonal treatment therapy drugs, such as Tamoxifen, aren’t effective against Triple Negative Breast Cancer.

Results will establish protocol to develop interventions
Health care providers, social workers and others can use the study data to develop programs to reduce and manage stressors in the lives of Triple Negative patients, Frierson said.

“We want to fill a gap that needs to be addressed,” she said. “The information from this pilot can help us develop programs and support groups to ease the burden on Triple Negative survivors. When we talk about breast cancer, many people think about the woman in her 50s. But these are young cancer survivors. Really understanding those differences is important.”

Health providers who have agreed to refer patients with medical approval by their physicians include: U.T. Southwestern and Parkland Hospital in Dallas; and Moncrief Cancer Institute in Fort Worth. As a partner in the study, The Cooper Institute in Dallas will provide participants with fitness testing. The survey is also online, so a woman outside the Dallas-Fort Worth area can answer a one-time questionnaire and participate in the study.

The survey, which takes 45 minutes to an hour to answer, asks questions about physical activity, diet, nutrition, compliance with doctor appointments, stress levels, body image, quality of life, relationships, friendships, fertility, depression, anxiety, sleep and fatigue.

The research is funded with a two-year, $50,000 grant from The Discovery Foundation, Dallas. — Margaret Allen

SMU is a private university in Dallas where nearly 11,000 students benefit from the national opportunities and international reach of SMU’s seven degree-granting schools.

SMU has an uplink facility located on campus for live TV, radio, or online interviews. To speak with Dr. Frierson or book her in the SMU studio, call SMU News & Communications at 214-768-7650.