Author Archives: sa160@duke.edu

Duke Students Travel to D.C. to Present Findings to FDA

May 6th, 2013

By Nonie Arora

Duke students outside the FDA. Evelyna Kliassov, Ryan Gimple, Jenae Logan, Hiruni Amarasekara, Biqi Zhang, Selina Chen, and Akash Shah. Credit: Huntington Willard.

Duke students outside the FDA. Evelyna Kliassov, Ryan Gimple, Jenae Logan, Hiruni Amarasekara, Biqi Zhang, Selina Chen and Akash Shah. Credit: Huntington Willard

Last month, Duke seniors presented findings on noninvasive prenatal testing at the Food and Drug Administration (FDA) in Washington D.C.

The students explained to government officials that noninvasive prenatal testing requires only a blood sample from a pregnant woman. Current tests, such as amniocentesis, involve extracting cells from the placenta or fluid surrounding the fetus.

Instead, with the new technology labs genetically sequence fetal, cell-free DNA from in the mother’s blood to test for certain disorders. The method can detect when a fetus does not have the normal number of chromosomes. Specifically, it can detect abnormalities in chromosomes 13, 18 and 21, which can lead to disorders such as Down’s Syndrome.

The technology can also identify some fetal, sex-linked disorders and certain single-gene mutations. It is reliable after seven weeks of pregnancy, the students reported.

The presentation was a final project of the Genome Sciences & Policy capstone course, which leads to students earning a certificate in the field.

The students said Duke geneticist Hunt Willard and Dr. Robert Cook-Deegan, the professors for the course, chose noninvasive prenatal testing as the capstone topic because it is a new and rapidly growing field.

“Our professors wanted us to have a feel for what it’s like to research technology while it’s happening, while decisions are being made about whether it’s accurate and reliable,” said Biqi Zhang, one of the students in the class.

To investigate the scientific basis for noninvasive prenatal testing, its challenges, the active stakeholders and associated ethical considerations, these students interviewed individuals involved with different aspects of the technology.

“We had to go out and connect with many well-established professionals in related fields. It was exciting to develop skills that you normally don’t inside the classroom,” said Selina Chen, another student in the course.

“We had the opportunity to contact researchers and CEOs of companies to gain a comprehensive understanding of the technology,” Zhang added.

Evelyna Kliassov presenting on cost-effectiveness of noninvasive prenatal testing to the FDA. Credit: Huntington Willard.

Evelyna Kliassov presenting on cost-effectiveness of noninvasive prenatal testing to the FDA. Credit: Huntington Willard.

The students said that the technology can and will fundamentally alter prenatal medicine. Throughout the semester, they have gained a nuanced understanding of its complexities and the viewpoints of many different stakeholders involved, from technology startup CEOs to primary care physicians.

“It was most exciting being able to go into the real world and see how this technology is being clinically implemented,” said capstone student Ryan Gimple.

“Traveling to the FDA was definitely nerve-wracking, for me at least,” capstone student Hiruni Amarasekara said. “We wanted to present a comprehensive report of the technology so that they could use this information in their decision making process on whether to recommend the test in the future. It was hard to tell what the FDA was thinking as we were presenting our information.”

The FDA has not yet stated a position on use of noninvasive prenatal testing.

Not your typical spring break

April 12th, 2013

By Nonie Arora

Students in front of Eisenhower Executive Office Building, Credit: Bob Cook-Deegan

Students in front of Eisenhower Executive Office Building, Credit: Bob Cook-Deegan

Seventeen Duke students had a taste of science policy over spring break. We traveled to Washington D.C. to meet with influential scientists and policy makers from a variety of different institutions, from the Genetic Alliance to the Office of Science and Technology Policy of the White House.

The trip clarified for many of us what science policy is like in action, and the winding paths that guide people to this career.

The students contributed to a trip blog, on which they discuss experiences such as seeing Bo Obama, the First Dog (!), outside the White House and “sipping the kool-aid” of genome science at the National Human Genome Research Institute.

The trip was sponsored by Focus and the Institute for Genome Sciences & Policy under the direction of professor Bob Cook-Deegan.

Sharing food beyond the table

April 7th, 2013

By Nonie Arora

Duke Senior Emily McGinty is pioneering an effort to connect campus farms across the country. McGinty, a senior Baldwin Scholar and public policy major from Pittsburgh, Pennsylvania, has been passionate about food issues since high school. On campus, she is also actively engaged in Round Table Selective Living Group and Team Kenan, and is the managing editor for Rival magazine.

Emily braids and hangs garlic after harvest to cure it for longer-term use at the Duke Campus Farm. Credit: Emily McGinty

Emily braids and hangs garlic after harvest to cure it for longer-term use at the Duke Campus Farm. Credit: Emily McGinty

When she was organizing food-related discussions with Nicole Tocco, a former Duke masters student at the Nicholas School of the Environment and current employee of Bon Appetit Management Company, McGinty had a breakthrough about one of the fundamental problems in campus growing communities. “There was no platform for connecting, no hub for sharing best practices and ideas,” McGinty said. She wanted to create a centralized resource that would enable campus growers to communicate best practices in their investigative agricultural work.

McGinty’s underlying inspiration to create this centralized hub for campus farmers and growers comes from her experience helping develop the Duke Campus Farm. While Duke’s campus farm is only two and half years old, it is well established and strongly documents its own agricultural practices and research. Students work with professors and practitioners around the Triangle to investigate problems from crop science to building construction. The Duke Campus Farm community is also committed to intentional community building. McGinty explained, “It’s about developing reciprocal relationships. It’s very much a process – not just ‘making friends.’ But you can call it a professional site visit or hopping over to say hey to a neighbor. We’re all about building a strong community and learning from each other.”

She said she feels privileged to work in an area where sharing ideas has no drawbacks. “A fundamental piece of our desire to create a central hub is that we [campus farmers and gardeners] are in a remarkable situation where we have nothing to lose by sharing business plans. Your average corporation cannot share all their business plans and how they function the way they are, but we only benefit from ideas spreading,” McGinty said. “We can share everything from the structure of our board of advisors to parameters used for growing 500 feet of potatoes.”

Popular sungold tomatoes are packed for the Duke Campus Farm's trip to market. Credit: Emily McGinty

Popular sungold tomatoes are packed for the Duke Campus Farm’s trip to market. Credit: Emily McGinty

Her team started by building an online platform where people across several college campuses could become members. They began with an online document, where members could upload their research practices in sustainable agriculture. Since then, they have gone through multiple iterations to find the best online home for the hub, which is still under development.

Over the last 6 months, she has conducted many site visits in North and South Carolina to pitch the idea and ask questions about how the hub would benefit others. One of McGinty’s major goals is to get students outside of the immediately interested food community to plug in. McGinty said she strongly believes that food work is interdisciplinary and undergraduate and graduate student research isn’t shared enough. She hopes that this website will reenergize original work produced by undergraduates relating to food issues.

Ultimately, McGinty hopes this open source philosophy will help campus farms across the country thrive by building communication networks and promoting evidence-based agriculture.

Student Profile: Arnab Chatterjee

March 28th, 2013

By Nonie Arora

Arnab Chatterjee, Duke Student. Credit: Chrislyn Choo

Freshman Arnab Chatterjee, Credit: Chrislyn Choo

Freshman Arnab Chatterjee spent three days in Abu Dhabi developing solutions to health care problems plaguing the Middle East. He travelled to the Global Issues Network conference, hosted by New York University in Abu Dhabi.

The conference pushes undergraduates to develop sustainable action plans to solve global problems on a regional level in just three days. It has a broad reach, from energy, to health, to waste management. The plans are intended as stepping-stones to bringing positive change to the region.

Chatterjee’s small group focused on mental health, which is often disregarded as a legitimate health concern in the Middle East.

“The ruling bodies of the UAE don’t acknowledge that mental health issues are a real problem, so it often gets swept under the rug,” Chatterjee said.

The group initially attempted to avoid a direct discussion of mental health by asking patients about irregularities in their sleeping and eating patterns, which can be early indicators of mental health issues.

Chatterjee’s team discovered that diabetes was one of the top contributors to the UAE’s mortality rate, and an issue that the government was very much invested in addressing. Multiple studies have suggested a correlation between an increase in the rate of depression among diabetes patients, and vice versa. Other work has shown that the mortality rates among patients with diabetes and depression are significantly higher than those with just diabetes, Chatterjee said. But in this region, seeking help for a mental illness is highly stigmatized. Addressing depression by targeting diabetic populations and their families alleviated this stigma somewhat.

Near the end of the conference, his team suggested that a clinical research study be conducted by New York University’s  public health institute in the region to address whether patient-family support specialists could be helpful in improving patient outcomes. They planned to screen for depression, but without describing the behavior by name. “People can be offended even by doctors asking questions that imply a patient has depression. It’s a delicate balance between being tactful but remaining effective,” Chatterjee said.

Abu Dhabi Skyline, Credit: Wikimedia CommonsChatterjee and his team presented their plan to health care providers from Cleveland Clinic’s medical center in Abu Dhabi, government officials, and the press in Abu Dhabi. He said it was well received by most, but that the government officials remarked that they would have preferred even less emphasis on mental health issues.

Beyond this specific project, Chatterjee said that attending the conference gave him a great opportunity to build a global network with other undergraduates with diverse interests. He is interested in medicine and research, works as a research assistant in the Nicolelis Primate Laboratory, and will be working as a Howard Hughes Research fellow this summer.

Thinking Beyond the Grave at Duke-UNC Bioethics Symposium

February 26th, 2013

By Nonie Arora

Duke student Meredith Rahman is intrigued by how we justify treatment of the dead for the sake of science. She asked her audience at the Duke-UNC Bioethics Symposium: How can we interact with human remains in an ethical way?

Duke Student Meredith Rahman Presents at Duke-UNC Bioethics Symposium. Credit: Nonie Arora

Rahman began the discussion by explaining how bodies are obtained for use after death. “Historically, there was great fear about grave robbings to further science,” she says, “but that has since calmed down.” Now, many bodies are obtained through donation, and we legitimize the use of bodies through prior consent when the subjects are still alive. In the 1980s however, the Body Farm in Knoxville, TN took unclaimed bodies from medical examiner’s offices to study decomposition, she added.

Rahman discussed what can happen when we can no longer speak for ourselves. There can be tension between the wishes of the deceased and wishes of the family members, and it can be hard to give a voice to those who have already passed away. This is similar to situations in which family members may override do not resuscitate (DNR) orders, Rahman clarified.

There’s a further issue of consent even when a person has signed a donor card to say that they want to donate their body to science: they don’t always know how their body will be used. “It could be an undergraduate student, such as myself, going into the lab and learning basic anatomy, or it could be an MD practicing a specific surgical skill. But when you consent to donate your body to science, you no longer have a say over what happens,” she said.

A plastinated human body exhibited at the Body Worlds show, Museum of Natural History, San Diego, 2009. Credit: Wikicommons. Photograph by Patty Mooney, Crystal Pyramid Productions, San Diego, California.

Some exhibits transform human remains for science education, such as the Body Worlds exhibit, according to Rahman. Body Worlds relies on a technique called plastination, which essentially turns human soft tissue into plastic. The result is a body that is about twenty percent human materials. She said that while these bodies can be effective teaching tools, there are ethical considerations, especially when commercial interests are involved and the primary purpose is public viewing rather than scientific development. The audience was shocked to hear that “slices of human” are available for purchase.

Rahman’s presentation was part of the Duke-UNC Bioethics Symposium, Ethical Frontiers in Research, a student-run conference developed by the Duke Undergraduate Bioethics Society (DUBS) and Carolina Bioethics Scholars (CUBS). This year, the organizations have received funding from the Kenan-Biddle Partnership grant as well as the Kenan Institute for Ethics and the Trent Center for Bioethics, Humanities & History of Medicine. As part of the Kenan-Biddle partnership, they are hosting an ongoing series of dinner discussions on bioethical topics. The next event will be hosted by UNC on Feb. 28; Dr. Steven Gray will discuss how gene therapy clashes with traditional pharmaceutical business models.

As an executive board member for DUBS, I am excited to continue our collaboration with UNC students. Although basketball rivalries may pull us apart, last weekend we found that lively ethical conversations can bring us together.

Finding Consciousness

February 21st, 2013

By Nonie Arora

Brain scans of various disorders of consciousness. Credit: Wiki Commons

Can we be certain whether a patient is minimally conscious or in a persistent vegetative state?

What kinds of rights do minimally conscious patients have?

How should minimally conscious patients be treated?

Scientists, ethicists, lawyers and physicians asked these questions at the Finding Consciousness workshop at Duke in January 2013.

Recently, neuroscientists have devised methods to detect consciousness in patients with severe brain injury who may not appear to be aware of themselves and others. But as the science develops so do new ethical dilemmas.

Patients with severe brain injury are often written off, despite growing scientific evidence of potential improvement, said Joseph Fins  from Cornell University. Fins gave the annual Nancy Weaver Emerson Lecture sponsored by the Trent Center for Bioethics, Humanities & History of Medicine as part of the workshop, and he focused on the application of neuroethics to the minimally conscious state.

Fins believes that family members of patients are often forced to make decisions about withholding or withdrawing care without complete, understandable information. They are compelled to consider organ donation, even prematurely. In his work, Fins interviews family members of brain injury patients. In one conversation, a mother of a patient described an interaction with a neurologist who called the patient “basically an organ donor now” and said, “He doesn’t have the reflexes of a frog.”

Then, the neurologist urged the mother to consider organ donation — all within 72 hours of the injury. Fins called for patients and family members to be treated with more sensitivity and respect.

Jeremy Fins. Credit: Trent Center for Bioethics, Humanities, and History of Medicine

The vegetative state has been seen as medical futility, and the paradigm was “once you’re vegetative, you’re done,” Fins said. However, physicians in the field have begun to see families and patients who have looked vegetative, but then suddenly showed some level of response to stimulus.

While some patients become permanently vegetative, others can become minimally conscious, Fins said, referencing a study where about 40 percent of patients who were diagnosed as vegetative were actually minimally conscious.

“This is unconscionable, but that’s where we are,” he said, adding that much of the disparity could come from disinterest, neglect and marginalization of these patients. People would not accept this level of misdiagnosis in cancer or diabetes care, he said.

It is our obligation to give voice to minimally conscious patients as a basic civil right, Fins said, especially as better methods of identifying these patients and stimulating recovery are likely to come in the future.

Physicians and Patients Make Best Decisions Together

November 27th, 2012

By Nonie Arora

Imagine yourself in this patient’s situation. You have just found out you have cancer, and the next phrase out of your doctor’s mouth is “You’re going to die with this cancer rather than of this cancer.” Which word do you think will jump out of that sentence? “With”? “Of”?

My money is on “die.” – Modified from Critical Decisions, pg. 99

Critical Decisions, Courtesy of www.peterubel.com

In Critical Decisions, Peter Ubel describes a common situation of a urologist explaining a prostate cancer diagnosis to a patient. In this exam room, the physician and the patient are on two different wavelengths. The doctor is trying to assuage the fears of the patient but is emphasizing technical details about the patient’s condition without first relating to the patient’s emotional shock from hearing a cancer diagnosis. Ubel suggests even a small acknowledgement of the patient’s emotional state could improve the situation. For instance, saying “I know it feels awful to be told you have cancer, but you should know that your cancer is curable. We can treat this.” (Critical Decisions, pg. 100)

Ubel, a Professor of Business Administration and Medicine as well as Public Policy, recently published Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together. In the book, he explores how the rise in patient empowerment has left many patients confused and physicians unprepared to appropriately partner with patients in making medical decisions.

“My background in clinical medicine, ethics, and behavioral sciences collided. That led me to an in-depth investigation of patient preferences in medical care,” says Ubel. While his ethics background left him sure that patients have the right to ultimately decide their own medical care, he wanted to use his understanding of behavioral economics to uncover how physicians can best help patients make the decisions.

Peter Ubel, Professor of Business Administration and Medicine and of Public Policy. Courtesy of Duke Today.

Ubel also comments on how some emotional desensitization is essential to practicing medicine, and how desensitization can involve medical humor. He says that sometimes physicians “need to step back and laugh at situations, but the danger is we don’t want to laugh at patients.”  He suggested a way to combat the negative aspects of desensitization is to discuss ethical issues during the 3rd year of medical education, when future physicians are being exposed to the realities of medicine through hospital rounds.

He says the bigger worry is that aspiring doctors start off with the right attitude, but beliefs and practices erode through training and practice as physicians. In the current medical system, physicians have many patients and very little time, so doctors can get into bad habits. However, he says that good communication doesn’t take more time – it just takes retaining the right skills. Ubel advocates for physicians to ask patients to explain back what they have understood to get a better idea of patient understanding.

One of Ubel’s next big challenges is studying how cost factors into patient empowerment. Discussions about cost can seem taboo or uncomfortable in the exam room, but costs certainly factor into many health care decisions.

The strength of Critical Decisions is Ubel’s multidimensional perspective: he presents facts from research studies in several disciplines and compellingly (even humorously) draws upon his experiences as a physician, patient, and family member of a patient.

Here’s a link to an excerpt from the book for more!

SNCURCS “Snickers” Conference Brings NC Undergrads Together

November 26th, 2012

By Nonie Arora

Duke student Katie Shpanskaya is excited about how education can change our brains.  She had the chance to share her work with other students in a poster session at the State of North Carolina Undergraduate Research and Creativity Symposium (SNCURCS).

Hundreds of undergraduates from several North Carolina universities came together to talk about research at SNCURCS (pronounced like Snickers, the candy bar) hosted by Duke University on November 17th.

In the lab of Dr. P. Murali Doraiswamy, Shpanskaya studies the effects of education on Alzheimer’s disease. Originally from Raleigh, Shpanskaya is a sophomore in Trinity College studying Neuroscience. When she’s not in classes or working in the lab, she tutors through UNITED (a high school tutoring organization that she is the president of) and mentors others through the Women’s Mentoring Network.

In Alzheimer’s, the part of the brain called the hippocampus experiences great neuronal cell death and amyloid plaques accumulate throughout the brain, Shpanskaya said. The hippocampus is important for memory, and Alzheimer’s disease is characterized by progressive memory loss. In the brains of patients with Alzheimer’s, the protein amyloid-beta builds up whereas this protein is normally broken down, Shpanskaya clarified.

Shpanskaya explained that the study she is working on has found that patients with higher education (17 or more years) had greater hippocampal volume size than those with less education (less than 12 years). Those with more education also had less overall loss of hippocampal volume. Shpanskaya also said that those who challenge themselves cognitively benefit: they retain more functionality when afflicted by Alzheimer’s.

MRI image depicting the hippocampal region of interest used in computing hippocampal volume. Courtesy of the Alzheimer’s Disease Neuroimaging Initiative (ADNI).

“Education likely acts through neuroprotective mechanisms, thereby decreasing volume loss to delay cognitive decline. This is supported by our results,” said Shpanskaya.

At the conference, students also had a chance to interact with faculty members from other institutions, and attend “Lunchbox Learning” sessions on topics such as avoiding research misconduct and applying to graduate school.

Overall, students appreciated the opportunity to attend the symposium and meet students from around the state. “I thought SNCURCS was a great symposium that really did a good job of bringing together students from all sorts of research backgrounds together to learn from each other and share their work,” said Trinity sophomore Akhil Sharma. “SNCURCS really showed a good sample of the great research institutions North Carolina houses and it was a great feeling to be a part of it all.”