JUNE 6, 2014 The Second Best Thing About Payday VOL. LXVI, NO. 12

Disparity Definition Needs Tightening, Braveman Says By Rich McManus

above · An iPad display attracts a youngster f the rich people in city A have higher rates of an illness than the rich people in city at USASEF 2014. See story below. I B, this qualifies, under current NIH criteria, as a health disparity. Similarly, skiers have higher rates of bone breaks and fractures than non-skiers. features “Does that fill you with moral outrage?” asked Dr. Pau- la Braveman, professor of family and community med- 1 icine and director of the Center on Social Disparities in Braveman Helps Define Disparity For NIMHD Health at the University of California, San Francisco. At her recent keynote talk marking National Minor- 3 ity Health Month, Braveman discussed the range of Clinical Trials Participant Shares Quest for Cures values informing the field of health disparities, a term coined in the 1990s. A student for more than 25 years 5 of the social determinants of health, she called for a Deisseroth To Give Nirenberg Lecture, June 11 fresh consideration of what constitutes a health dis- parity, based on international human rights principles 12 that have been endorsed (but not necessarily fulfilled) Rain Mars BTWD Attendance by nearly all nations. Dr. Paula Braveman gives lecture for Disparities, she argued, are health differences that National Minority Health Month. are unfair in a particular way. As the ski example departments see braveman, page 8 NIH Pavilion Draws Crowd at Science & Link Between Genomics, Theater Shown Briefs 2 Engineering Festival By Raymond MacDougall Digest 10 NIH recently participated in the 3rd USA Sci- A group of theater professionals, including a Feedback 11 ence & Engineering Festival (USASEF) in number of award-winning playwrights, met Washington, D.C., the nation’s largest bien- recently with scientists and staff from the nial celebration of science, technology, engi- National Human Genome Research Institute neering and math. As a testament to Presi- to explore the intersection of genomics and dent Obama’s initiative to graduate 1 million theater. STEM students over “The Drama of DNA: the next decade, the Theater and Genom- U.S. Senate passed a ics Workshop” was resolution this year part of an initiative supporting the fes- led by Karen Rothen- tival and designated berg to explore theater the last week of April as a way to examine as National Science the ethical, legal and Week. social implications of “A nation gets what genomics. it celebrates! As a Participants heard culture, we celebrate Karen Rothenberg about real-life case movie stars, rock A father shares a polyoma- introduces plays with studies involving ethi- stars and athletes virus model with his son at a science theme at the cal dilemmas and fam- and we generate a NIH’s 3-D Print Exchange Smithsonian Institution ily drama. Dr. Sara The NIH Record is recyclable lot of them…but we as office white paper. booth during USASEF. in Washington, D.C. Hull, director of the see festival, page 6 see theater, page 4 briefs

Common Fund Hosts Anniversary Symposium, June 19 in Masur Auditorium On Thursday, June 19, the NIH Office of the Director will host a symposium to commemorate a combined 10 years of achievement by the NIH Roadmap/NIH Common Fund. Join us as we look back over a decade of discovery and showcase the extraordinary achievements of this unique set of programs. NIH leadership, both past and present, will discuss the history of the Common Fund and share a glimpse of what the future NCI Shady Grove Trains for Emergency Response may hold. Grantees from several Common Fund About 2,000 National Cancer Institute employees programs will present scientific findings and and contractors recently participated in a tornado share how Common Fund support played a criti- response drill at the NCI Shady Grove facility. It cal role in these discoveries. The symposium will was part of the Federal Emergency Management also feature winning videos from a competition Agency’s PrepareAthon! Campaign, which conducts that was open to all Roadmap/Common Fund grantees, as well as a special song performance bi-annual National Days of Action. NCI Emergency by NIH director Dr. Francis Collins. Preparedness Program volunteers helped carry out the exercise. The drill allowed NCI staff to practice The symposium will be held from 8:30 a.m. to escape to nearby safe areas and ensured that 5 p.m. in Masur Auditorium, Bldg. 10. The event occupancy levels in each shelter area did not exceed The NIH Record is published biweekly at will be videocast at https://videocast.nih.gov. Bethesda, MD by the Editorial Operations capacity. Prior to the drill, 19 members of the NCI Branch, Office of Communications and Public For more information, visit http://commonfund. emergency response team received FEMA certificates Liaison, for the information of employees of nih.gov/commemoration or contact Rachel Britt, for completing the national Community Emergency the National Institutes of Health, Department [email protected]. of Health and Human Services. The content is Response Team curriculum. reprintable without permission. Pictures may IntraMall Holds Summer Showcase, June 11-12 be available upon request. Use of funds for printing this periodical has been approved by The 16th annual NIH IntraMall Summer Showcase Sieving Elected to German Academy of Sciences the director of the Office of Management and will be held in the South Lobby of Bldg. 10 on Dr. Paul Sieving, director of the National Eye Budget through September 30, 2014. Wednesday, June 11 and Thursday, June 12 from 9:30 a.m. to 2 p.m. The event is hosted by the Institute, has been elected to the German Academy To receive alerts to our latest issue, send an of Sciences. Known as Deutsche Akademie der email to [email protected] with the words IntraMalls electronic purchasing site designed “Subscribe NIHRECORD” in the message body. exclusively for NIH to simplify purchasing. Wissenschaften, or simply the NIH Record Office Bldg. 31, Rm. 5B41 Since opening in June 1998, the IntraMall has Phone (301) 496-2125 Fax (301) 402-1485 Leopoldina, it is become a leading NIH web site for government the German coun- Web address http://nihrecord.nih.gov/ purchase cardholders to locate, buy and track terpart of the U.S. Editor purchases from hundreds of the most frequently National Academy Richard McManus used suppliers, offering more than 14 million of Sciences [email protected] laboratory, office and computer items. and the British Associate Editor Those with a valid fda.gov or nih.gov email Royal Society. Carla Garnett [email protected] address may register for a free lunch at www. Leopoldina is the intramalls.com/showcase. A daily list of vendors oldest learned Staff Writers will be displayed to assist you in visiting more Dana Steinberg society in the [email protected] than 60 suppliers to learn about new product world and pro- and service offerings. Belle Waring vides analysis on [email protected] If you require reasonable accommodation to issues that affect participate, call 1-888-644-6255 during busi- the world from a scientific and medical perspec- The NIH Record reserves the right to make corrections, changes or deletions in submitted ness hours. tive. About three-quarters of its 1,500 members copy in conformity with the policies of the are from Germany, Austria or Switzerland. The paper and HHS. remaining membership represents 30 other nations. Notable members include Charles Darwin, Albert NIH...Turning Discovery Into Health Einstein, Johann Wolfgang von Goethe and Max Planck, as well as 57 Nobel laureates.

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Clinical Trials Partipicant Helps in Search ies. In fact, she is currently involved in an For Parkinson’s Cure NINDS trial at the Clinical Center. By Shannon E. Garnett “I’m especially proud of being in PRE- CEPT and PostCEP because they have giv- Twelve years ago, Jean Burns’ life was quite full. en researchers a lot of data about PD,” she A military wife, she had lived in Germany and the said. “We were the first large group to be U.S. and was working as a software trainer, web considered a control group for PD.” developer and ESL (English as a second language) instructor. But in 2003, her life changed: She was Of course, participation is one of the key diagnosed with Parkinson’s disease, which led requirements for a clinical trial. Howev- her to shift gears and make room for yet another er, it is also one of the most difficult ele- role—clinical trials participant. ments for most trials to fulfill. “I found my first trial on the web,” Burns said. “I People take part in trials for many rea- signed up 6 months after my diagnosis because I sons. Healthy volunteers may participate wanted the chance to have a promising treatment to help others or to help advance science. as early as possible.” Participants with an illness may par- ticipate to receive access to what might Using her web become the newest treatment or to gain skills, she searched access to additional care and attention Burns said the difficulty of patient travel the Internet for from clinical staff. should be a consideration in clinical trial information about planning. PD and taught The flip side is that there also are many herself about reasons that keep people from participating. Reasons vary and range from clinical trials. She potential health risks that may be associated with a study medication to sched- quickly under- uling conflicts and travel costs. For research conducted at the Clinical Center, stood their impor- participants typically incur little cost, but that is not the case for all trials. tance and the vital According to Burns, there are also disease-related issues that hamper participa- role of participa- tion. “Another barrier that is little understood by ‘healthy’ people is the fatigue tion. “Before me we have with PD,” she explained. “Traveling by plane is a form of torture. On there were hun- paper, asking me to travel on Tuesday for an appointment on Wednesday morn- dreds and thou- ing and then return travel on Wednesday afternoon seems reasonable. But it is sands of other totally exhausting for a person with PD who lives in a western state like Arizona people with PD Jean Burns offers a comment at with a 5-hour plane ride each way. I have done it but it takes me several days to who participated recover once I get home.” the Parkinson’s Disease 2014 in clinical trials. conference held earlier this year Their participa- To overcome these barriers as well as others, Burns suggests that researchers at NIH. tion gave me the include patients in the planning stages of trials. “Have more patients as mem- ability to have the medications I take today,” she bers of institutional review boards to ensure that patient volunteers are treated said. “If no one participates, there will be no new respectfully and with care. And, include patients when you have conferences or treatments and no cure.” So, Burns not only par- meetings or need input before making decisions that affect our lives,” she said. ticipates, she advocates and promotes clinical Burns also suggests that people considering trial participation do their home- research as well. work. “Take your time,” she said. “Research. Learn everything you can about the Clinical trials are research studies that involve trial. Don’t join a clinical trial unless you feel very sure. Call the study nurse and people. Some test new therapies, new ways of ask questions. List the pros and cons.” using known treatments or methods of disease Her trial experiences are well documented in her private blog—Pdblogger.com— detection or prevention. Others help researchers and web site she co-founded—PDPlan4life.com. Through these sites, she and learn important fundamental information about her fellow advocate, Sheryl Jedlinski, share personal experiences about living disorders. Most treatments used today are the well with PD. NIH also provides a web page, Clinical Trials and You at www.nih. results of past clinical trials. gov/health/clinicaltrials as well as Clinicaltrials.gov (www.clinicaltrials.gov), a Burns’ first trial—called PRECEPT or Parkinson searchable database of federally and privately supported clinical studies conduct- Research Examination of CEP-1347 Trial—tested ed in the U.S. and around the world. The Michael J. Fox Foundation offers a trial a potential neuroprotective drug called CEP-1347 finder web site for PD trials, https://foxtrialfinder.michaeljfox.org/. that researchers thought would slow or even stop “You don’t have to sit back and take the disease as it comes—you can fight back,” the progression of PD. Although the drug did not said Burns. “Participating in clinical trials is my way of fighting back.” perform as hoped and the trial was later stopped, Burns kept the faith. Her first trial led to a sec- ond, long-term follow-up trial called PostCEP. Since then she has participated in many stud- 3 you never really know what you might hear that you can use.” Dr. William Gahl, director of the NIH Undiag- nosed Diseases Program, told about a patient whose complex and undiagnosed disorder had been studied at NIH. She developed an unrelat- ed condition, which became serious after local THEATER continued from page 1 doctors didn’t treat it quickly enough. The story illustrated how undiagnosed patients face prej- udice—even from their doctors—because of Above: NHGRI Bioethics Core, described a research their undiagnosed conditions. “They lose some The Drama of DNA workshop project in which a father, who carried the gene credibility because they can’t put a name on featured a panel of nationally mutation associated with a high risk for breast their disease,” he said. acclaimed playwrights: (from and ovarian cancer, chose not to tell his daugh- l) Dorothy Fortenberry, Lisa ters of their potential risk for the disease. NIH Dr. James Evans, Bryson distinguished profes- Loomer, Cassandra Medley and researchers requested an ethics consult because sor of genetics and medicine at the University Anna Ziegler. they felt torn between a parent’s rights and of North Carolina School of Medicine at Chapel those of his children and wondered whether Hill, described a genetic counseling session with a patient whose family members carried a gene photos: john daniels, maggie they were morally obligated to persuade him to bartlett share the information. mutation that meant they had a high risk for early onset Alzheimer’s disease. “Families are full of drama,” Hull said. “At their best, they’re nurturing and caring—great places “She was really grappling with this,” Evans said, to grow up and come home to. But it’s not all describing her dilemma to seek genetic test- good. They lie to each other and keep secrets ing herself. “The pros and the cons for her were from each other. They pass along their bad hab- much different than they would be for some- its and their bad genes to their children—and one else.” they blame each other for that.” “Common to all the narratives is the fact that genetics and genomics are all about fam- “Families are full of drama. At their best, they’re ily and relationships,” Rothenberg observed. “There’s so much richness. If there were more nurturing and caring—great places to grow up and plays that explored these dilemmas, it might come home to. But it’s not all good. They lie to each encourage these conversations in families. With the increase in genetic testing and genom- other and keep secrets from each other. They pass ic sequencing, wouldn’t it be great for theater along their bad habits and their bad genes to their to help audiences explore whether they would children—and they blame each other for that.” want to know a genetic test result—and share it with their family?” Among the 15 playwrights were local theater “Theater has a long history of addressing social, professionals associated with Arena Stage and political and cultural issues,” said Jacqueline Theater J in Washington, D.C.; and the the- Lawton, a D.C.-based playwright. “The scienc- ater department at Montgomery College in es—especially the intricate, rich, deeply per- Rockville. One attendee was Joshua Ford, a sonal and ethical complexities of genomics and playwright affiliated with Theater J’s Locally genetics—have an enormous impact on our Grown Initiative. daily lives. When theater artists and scientists “I tend to write about history and am always work together, we can help break down the bar- interested in science as a theme,” said Ford. He riers that exist between scientists and the pub- is currently exploring the dramatic possibilities lic. We can encourage learning and curiosity.” associated with the life of Fritz Haber, recipi- After the workshop, many participants went ent of the 1918 Nobel Prize in chemistry. A to the Smithsonian’s S. Dillon Ripley Center in controversial figure, Haber was credited with Washington, D.C., to take in scenes from four a process for synthesizing ammonia from its plays and to discuss the illustrated ethical and elements used both for fertilizer (food produc- societal implications. The evening performance tion) and explosives. was organized in conjunction with the Smithso- “I love contradictions in people,” Ford said. nian Institution’s National Museum of Natural “Those are stories that I’m interested in telling, History-NHGRI exhibition, Genome: Unlocking the stuff that grabs me. I’m really interested in Life’s Code. hearing the case studies and narratives because 4 NIH RECORD JUNE 6, 2014 JUNE 6, 2014 VOL. LXVI, NO. 12

Deisseroth To Give Nirenberg Lecture, August To Give WALS Lecture, June 10 June 11 in Masur Auditorium Dr. Avery August will discuss “Nature vs. Nurture: Tun- Dr. Karl Deisseroth of Stanford University will ing CD8+ T cell Responses” on Tuesday, June 10 at 3 deliver the fourth annual Marshall Nirenberg p.m. in Masur Auditorium, Bldg. 10. His presentation is Lecture as part of the 2013-2014 Wednesday a special Tuesday version of the NIH Director’s Wednes- Afternoon Lecture Series. Deisseroth’s talk, day Afternoon Lecture Series (WALS). “Optical Deconstruction of Fully Assembled August has made critical discoveries in the area of T cell Biological Systems,” will be held on Wednes- signaling. His work has focused on the Tec family of non- day, June 11 at 3 p.m. in Masur Auditorium, receptor tyrosine kinases in T cell function in the devel- Bldg. 10. opment of allergies and asthma and in the development Deisseroth is a Howard Hughes Medical Insti- of specific T cell populations. He has also made important discoveries on the tute investigator and D.H. Chen professor of function of eosinophils in regulating the development of allergic asthma. bioengineering and of psychiatry and behavior- For the WALS lecture, he poses the question: Are T cell immune responses more al sciences at Stan- dependent on the properties of the antigen-specific receptors generated in the ford. He received thymus during their development or the amount of signal that the T cell receives his undergraduate when the T cell receptor interacts with MHC complexes? biochemical sci- ences degree from Since 2010, August has held the position of professor of immunology and chair Harvard Univer- of the department of microbiology & immunology at Cornell University Col- sity. He obtained lege of Veterinary Medicine. Prior to Cornell, he was a distinguished professor of both his Ph.D. and immunology in the department of veterinary & biomedical sciences and director his M.D. (neurosci- of the Center for Molecular Immunology & Infectious Disease at Pennsylvania ence) from Stan- State University, where he started as an assistant professor in 1999. ford. His current There will be a reception and an opportunity to talk with the speaker in the NIH research develops Library following the lecture. optical methods for high-resolu- tion investigation 20th Police Awareness Day of intact biological Draws Crowd systems. His group has pioneered optogenetics, The NIH Police hosted NIH’s 20th a technology that uses light to control millisec- annual Police Awareness Day on ond-precision activity patterns in defined cell May 13 on the lawn in front of types in the brains of freely moving mammals, Bldg. 1. As grill smoke filled the and CLARITY, a chemical engineering technol- air and popular music played, ogy that enables high-resolution structural and attendees enjoyed lunch (r), a molecular access to intact brains. A practicing pretty day and a variety of exhibits psychiatrist, Deisseroth has also applied his put on by local law enforcement technologies to study anxiety, depression and agencies. Among the attractions social dysfunction. were horses used by U.S. Park Police. Children from the NIH preschool program found them irresistible. There was a serious side to the BBQ as well; the names of 105 officers The lecture, established in 2011, recognizes who were killed in the line of duty in 2013 were listed on a plaque and solemnly Nirenberg for his work to decipher the genetic recalled. Below, Chief Alvin Hinton (l) and Lt. Udon Cheek remember fallen officers. code, which resulted in his receiving the 1968 photos: chris jones Nobel Prize in physiology or medicine. Niren- berg’s research career at NIH spanned more than 50 years; his work also focused on neuro- science, neural development and the homeobox genes. The Nirenberg lecture recognizes out- standing contributions to genetics and molecu- lar biology. For lecture information and reasonable accom- modation, contact Jacqueline Roberts, (301) 594-6747.

5 FESTIVAL continued from page 1

Above, from l: don’t celebrate science and engineering,” said Francis Collins was one of the speakers who At the NIH Pavilion at the Larry Bock, co-founder of USASEF. He added, addressed a standing-room only crowd. USA Science and Engineering “Strengthening the STEM educational founda- NIH hosted a 5,600-square-foot anchor exhibit Festival, NIDDK’s Diane tion of our nation is vital to our future economy Tuncer (l), deputy director and the health, safety and well-being of Ameri- in the Health and Medicine Pavilion where chil- of the National Diabetes ca’s families.” dren and families journeyed through an inter- Education Program, helps active obstacle course of 25 hands-on activi- children “Be a Sugar Detective.” Since USASEF’s inception, NIH, a 2014 spon- ties led by 20 institutes and centers. In the NIH sor, has had widespread involvement. Last Pavilion, participants were able to find out how February, NIDDK director Dr. Griffin Rodgers researchers are advancing science with new 3-D The 3-D Print Exchange team spoke at Buck Lodge Middle School in Adel- printers that transform digital files into physi- included (from l) Meghan phi, Md., as part of the Nifty Fifty Speaker cal objects; explore DNA and the human brain; Coakley, Katie Rush, Damien program. Nifty Fifty is one of the national and measure lung capacity. Also, attendees Terry, Sybil Philip, Jeremy STEM initiatives organized before the festi- studied how the body works by learning about Swan and Meredith Daly. val for 180,000 students and teachers. NIH’s eyes, ears, joints and skin; found out how much The team showed visitors 3-D involvement continued at the Walter E. Wash- sugar is really in foods and drinks; and tested printers at work and hosted ington Convention Center on Apr. 24-27 for interactive activities for kids, their knowledge of regenerative medicine and the X-STEM Extreme STEM Symposium, showing them how to build biomedical imaging. scientific models from objects Sneak Peek Friday, Meet the Scientists and the Grand Finale Expo. At the USASEF Career Pavilion on Apr. 26, made with the printers. attendees were able to “Meet the Scientists,” Attracting more than 325,000 people, the Con- during a 1-hour networking extravaganza photos: jeremy swan, jessica vention Center was filled every day during the where students met NIH staff representing meade festival with enthusiasts—young and old— many different career fields. learning, creating and exploring the wonders of STEM. On Apr. 24, more than 5,000 students The NIH Office of Administrative Management participated in the Extreme STEM Symposium, and Communications thanks the hundreds of which offered presentations from a group of NIH staff who worked, volunteered and other- visionaries who aimed to empower and inspire wise supported efforts to make the NIH foot- youth about careers in STEM. NIH director Dr. print at USASEF a success.

At left, children and parents played an iPad game “Who Wants to be a Bioengineer?” and racked up points while learning about bioimaging, robotics and bioengineering. At right, visitors are fascinated by a 3-D printer as it turns a digital file into a physical object right before their eyes. 6 NIH RECORD JUNE 6, 2014 JUNE 6, 2014 VOL. LXVI, NO. 12

Maddox Takes Helm at Seto Named NEI Deputy Director NIMHD By Daniel Stimson

Dr. Yvonne Maddox has Dr. Belinda Seto joined NEI as its deputy director been named acting direc- on Apr. 7. She comes from NIBIB, where she served tor of the National Insti- as deputy director for 11 years, starting just 3 years tute on Minority Health after the institute was established. and Health Disparities. NIH director Dr. Fran- Her professional career—and lifelong passion—in cis Collins announced her biomedical research actually started at NIH. After selection recently, follow- earning her Ph.D. in biochemistry from Purdue ing NIMHD director Dr. University, she came here in 1974 as a postdoctoral John Ruffin’s retirement fellow working with Drs. Earl and Thressa Stadt- in March. man at NHLBI. The Stadtmans—who are the namesake of the Stadtman Ten- ure-Track Investigators Program—led a world-class biochemistry lab. Their “I commend Dr. Ruffin research helped establish some of the basic principles found in today’s bio- for his years of service to the NIH and the commu- chemistry textbooks, including enzyme function and regulation. nity that is so in need of the research supported by NIMHD,” Maddox said. “I am looking forward to The pair was also famous for a mentoring style that became known as the working with NIMHD staff and my other colleagues Stadtman Way. Seto said the Stadtmans treated their lab like a family, but that at the National Institutes of Health and Depart- they were also tough and could deliver rapid-fire critiques to their students ment of Health and Human Services to continue to and postdocs. “They fostered rigorous scientific debates. I learned that criti- advance the programs of the institute. In addition, cism should not only be accepted but appreciated,” Seto said. “They also taught I look forward to listening and working with the me to take risks and not be afraid of failed experiments and that negative many stakeholders to assess and identify the needs experiments are often as informative as those that worked as predicted.” of the various populations that we serve.” After completing her postdoc, she took those critical thinking skills to the Prior to joining NIMHD, Maddox served as depu- FDA to conduct research on hepatitis B and vaccine development. About 10 ty director of NICHD. She has also served as acting years later, she returned to NIH and soon took a position at the Office of deputy director of NIH from January 2000-June Extramural Research, where she oversaw analysis and reporting of NIH grants 2002 and co-chaired the first NIH Strategic Plan to data. She ultimately became deputy director and then acting director of OER Reduce and Ultimately Eliminate Health Disparities. before moving to NIBIB. Maddox has also served as executive director of the The skills she applied in her research have served her well in analyzing trends, HHS cancer health disparities progress review group needs and opportunities in the extramural research world, Seto said. “Wheth- and co-chaired the HHS Initiative to Reduce Infant er you’re doing research or in a position to guide research policies, you always Mortality in Minority Communities. She has also need to think about what’s going to yield the most productivity,” she noted. served on many public service and academic boards. While at NIBIB, she began helping steer the institute’s management of “big Maddox first came to NIH in 1985 as a health scien- data,” which refers to the ballooning volumes of data produced in research, tist administrator at the National Institute of Gener- especially through medical imaging. She continues to serve on the executive al Medical Sciences. Before that, she was a research committee of the NIH Big Data to Knowledge (BD2K) initiative and its over- assistant professor in the department of physiol- sight body, the NIH scientific data council, which are providing researchers ogy and biophysics at Georgetown University Medi- with better tools and training to deal with big data. cal Center. As a cardiovascular physiologist, Mad- Seto is also continuing the tradition of mentorship she learned in the Stadt- dox has served in several scientific roles at NIH and man lab. She has chaired the NIH working group on women in bioengineering, has authored numerous scientific papers and review which aims to recruit and advance women in the bioengineering field, and she articles and delivered keynote scientific lectures is a recipient of the Ruth Kirschstein mentoring award. domestically and internationally. She has received many honors and awards. She was attracted to NEI, she said, because the vision research community has been at the forefront of pioneering areas such as stem cell therapy and Maddox received her B.S. in biology from Virginia gene therapy. This was a fortuitous time to join the institute, she said; the NEI Union University and her Ph.D. in physiology from Audacious Goals Initiative recently launched and will seek ways to regenerate Georgetown University. damaged nerve cells within the visual system. “My biggest challenge is to help As acting director, Maddox will oversee the NEI reach that goal,” she said. NIMHD budget of approximately $268 million. Additionally, she will assist in providing leader- ship for the minority health and health dispari- ties research activities of NIH, which constitute an annual budget of about $2.8 billion.—Cherie Duvall Jones and Gerda Gallop-Goodman 7 BRAVEMAN continued from page 1

shows, not all health differences are unfair. Braveman favors a definition of disparity enun- ciated by British social scientist Dr. Margaret Whitehead, who says we ought to focus not just on any differences in health status among any groups, but on those that are “unfair, avoidable and unjust.” Braveman acknowledged that the National Institute on Minority Health and Health Dis- Right: parities is faced with a dizzying array of needs, The obligation of a just society difficult to balance. Should NIMHD focus on is to focus on those with the autism? People with catastrophic genetic dis- greatest social and economic eases? Veterans? Men, who have a shorter life obstacles to fulfilling their expectancy than women? rights, Braveman said. photos: bill branson Human rights principles provide guidance, Braveman said. She argues that people have the right to attain the highest possible standard of health, the right to education, the right to a many health disparities are unknown, “includ- decent standard of living (needed for health), to ing many important ones.” She also noted that the benefits of progress, to non-discrimination if you count up all the vulnerable groups within and to equality of rights. the United States, it turns out to include “most of the population,” which is clearly untenable as Proceeding from these rights, which are globally a focus for NIMHD. accepted even if not always achieved, are eco- nomic, social and cultural rights that cannot be She called for a focus on groups that have his- separated from the civil and political rights with torically experienced discrimination or mar- which most of us are more familiar, e.g., free- ginalization. We should consider the depth and dom of speech. duration of the disadvantage, including which groups have experienced atrocities, slavery, Jim “A group’s history of exclusion and marginaliza- Crow and intergenerational poverty. tion,” from such rights should be an important factor in defining a disparity, she said. “There are measurement challenges, too,” she said. What is the reference group for compari- Braveman proposes a human rights-based defi- son? She set a high bar—the health of the most nition of health disparities, which are closely socially privileged group, i.e., those with the linked to social and economic disparities. We greatest wealth, power and prestige, arguing need to focus on those disparities that adverse- that that indicates what should be biologically ly affect groups who have experienced greater possible for everyone. obstacles to health, she said. Braveman’s espousal of human rights values “Not all health differences are health dispari- and concepts springs from both the accumu- ties,” she said. “The key is ‘What adversely lated gravity of ideas accepted around the affects socially disadvantaged groups?’ When world and from a sense that such principles you put already socially disadvantaged groups conceive of health equity as an entitlement, at further disadvantage with respect to health, not as a charity. that’s a double-whammy.” Only a values framework that sets its bench- Braveman’s talk, “Health Disparities: The Issue mark at the highest attainable standard of Is Justice,” made the case that equity is justice. health can hope to interrupt a vicious cycle of “Disparities or inequalities are the metric we harmful exposures, vulnerability and unequal use to assess progress toward equity.” consequences, she maintains. The obligation of a just society is to focus on “Pursuing equity requires swimming against pre- those with the greatest social and economic vailing tides,” she concluded. “We will encoun- obstacles to fulfilling their rights, she said. ter resistance. We therefore need to be very clear Braveman acknowledged that the causes of about where we are headed and why.” 8 NIH RECORD JUNE 6, 2014 JUNE 6, 2014 VOL. LXVI, NO. 12

NIEHS Reflects: Four Years After Deepwater Horizon

Apr. 20 marked 4 years since the Deepwater Hori- zon oil spill in the Gulf of Mexico. The NIH response included worker training and research into potential health effects of that work. NIEHS took the lead in that effort, train- ing more than 100,000 clean-up workers and Participating in the roundtable were (from l) Dr. Laurel Northouse of the University initiating the GuLF Study, the largest study of Michigan; Dr. Laura Gitlin of Johns Hopkins University; NINR director Dr. Patricia ever conducted on the potential health effects Grady; ONS president Dr. Mary Gullatte; Dr. Michael Irwin of UCLA; and Dr. of an oil spill. Kathleen Knafl of UNC-Chapel Hill. At a recent media teleconference, NIEHS pre- sented preliminary observations from the NINR, ONS Co-Host Roundtable on Science of Caregiving ongoing GuLF Study and urged participants to NINR and the Oncology Nursing Society (ONS) recently co-hosted the 2014 stay involved. National Nursing Research Roundtable. Since 1987, the annual event has The study enrolled more than 33,000 people, brought together an interdisciplinary group of clinicians, scientists, educa- each of whom completed a telephone interview. tors, scholars and policy leaders from across the country to discuss priorities A subset of 11,000 completed home exams. in science, practice and policy. The focus of this year’s roundtable was “The Dr. Dale Sandler explained that researchers are Science of Caregiving,” an increasingly important subject given the increase now contacting all participants to interview in the incidence of chronic illness and aging of the population. them regarding current health status. Partici- “Managing chronic illness is increasingly shifting from health care providers pants living within 60 miles of New Orleans or to individuals, their families and the communities where they live and there Mobile, Ala., are invited to take part in more is increasing awareness that the responsibilities of caring for family members detailed clinical exams. or friends can have a significant impact on the health of lay caregivers,” said Sandler, lead researcher for the GuLF Study NINR director Dr. Patricia Grady during opening remarks. “This is an area and head of the NIEHS Epidemiology Branch, where the nursing community is ideally positioned to design and test caregiv- reported that preliminary observations indi- er health interventions and translate research findings into clinical and com- cate clean-up workers were about 30 percent munity health practices.” more likely to have moderate to severe depres- The keynote address was delivered by Dr. Michael Irwin, a professor and sion than residents who did no clean-up work. researcher at the University of California, Los Angeles, who discussed health Results were similar for anxiety. issues faced by caregivers of persons with dementia. Because many older “It’s important that the 33,000 people enrolled adult caregivers report sleep disturbances, Irwin also discussed sleep as a in this study stay involved, because these early modifiable risk factor for fatigue, depression and other health issues. He con- findings need to be followed up over time,” said cluded by recommending future research directions, such as further stud- Sandler. “At this point, it is hard to know if the ies that address the association between sleep disturbance and inflammation increased frequency of depression and anxiety that may contribute to cardiovascular disease and increased mortality. in workers is because of exposure to oil and dis- ONS president Dr. Mary Gullatte described current activities at ONS and persants or something else about the oil spill Grady provided an NINR update, in which she summarized studies focused experience and its aftermath,” she said. on caregiving. The scientific presentations also targeted caregiver health. “If participants haven’t already done so, we “Nursing is interlinked with caregiving,” Grady said, noting that caregiv- encourage them to call 1-855-NIH-GULF ing is encompassed by self-management, which is one of NINR’s four scien- (1-855-644-4853) to participate in the health tific areas of emphasis for implementing the institute’s strategic plan. “It is exam and other study activities,” Sandler through these research efforts that we may advance caregiver health and thus said.—Robin Mackar promote its critical role in supporting the management of chronic condi- tions.”—Natalie Zeigler

9 Study Links High Cholesterol Levels to Lower Fertility High cholesterol levels may impair fertility in couples trying to achieve a pregnancy, according digest to a study by researchers at NIH, the University at Buffalo and Emory University. Researchers Discover Key Factor in Early Couples in which each partner had a high cho- Auditory System Development lesterol level took the longest time to reach Researchers at NIH have uncovered a molecule pregnancy. Moreover, couples in which the in dan animal model that acts as a key player woman had a high cholesterol level and the in establishing the organization of the audi- man did not also took longer to achieve preg- tory system. The molecule, a protein known nancy when compared to couples in which as Bmp7, is produced during both partners had cholesterol levels in the embryonic development and acceptable range. acts to help sensory cells find “We’ve long known that high cholesterol lev- their ultimate position on the els increase the risk for heart disease,” said the tonotopic map, which is the fun- study’s first author, Dr. Enrique Schisterman damental principle of organiza- of NICHD, which led the study. “In addition to tion in the auditory system. The safeguarding their health, our results suggest tonotopic map groups sensory that couples wishing to achieve pregnancy cells by the sound frequencies would improve their chances by first ensuring that stimulate them. The study that their cholesterol levels are in an accept- is the first to identify one of able range.” the molecular mechanisms that determines position. The study findings were published online in the Journal of Endocrinology and Metabolism. Findings from the study, led by Drs. Zoe F. Mann and Mat- Single Episode of Binge Drinking Linked to thew W. Kelley of the Labora- Gut Leakage, Immune System Effects tory of Cochlear Development A single alcohol binge can cause bacteria to leak at NIDCD, were published in the from the gut and increase levels of bacterial tox- May 20 issue of Nature Commu- ins in the blood, according to an NIH-funded nications. The research was per- study led by Dr. Gyongyi Szabo of the University Researchers at NIH have formed in collaboration with scientists from the of Massachusetts Medical School. Increased lev- uncovered a molecule in an University of Virginia School of Medicine and els of these bacterial toxins, called endotoxins, animal model that acts as Imperial College in London. The American Hear- were shown to affect the immune system, with a key player in establishing ing Research Foundation also provided support. the organization of the the body producing more immune cells involved auditory system. An additional study, appearing in the same edi- in fever, inflammation and tissue destruction. tion, is led by NIDCD-supported researchers Dr. The article appears online in PLOS ONE. Benjamin R. Thiede and Dr. Jeffrey T. Corwin of Binge drinking is defined by NIAAA as a pat- UVa. Working in collaboration with Mann and tern of drinking alcohol that brings blood alco- Kelley, the researchers reveal that another sig- hol concentration to 0.08 g/dL or above. For a naling molecule, retinoic acid, acts in concert typical adult, this pattern corresponds to con- with Bmp7 to position cells. suming 5 or more drinks for men, or 4 or more “The findings could open doors to therapies that drinks for women, in about 2 hours. take advantage of Bmp7’s navigational talents “While the negative health effects of chronic to direct the formation of regenerated sensory drinking are well-documented, this is a key study cells that are tuned to respond to a specific fre- to show that a single alcohol binge can cause quency,” says NIDCD director Dr. James F. Bat- damaging effects such as bacterial leakage from tey Jr. “Since many forms of hearing loss are the gut into the bloodstream,” said NIAAA direc- limited to specific frequencies, this approach tor Dr. George Koob.—compiled by Carla Garnett could lead to replacement sensory cells that are tailored to individual needs.”

10 NIH RECORD JUNE 6, 2014 JUNE 6, 2014 VOL. LXVI, NO. 12

Response from ORS: Currently, the NIH main campus has a total of 9,889 park- ing spaces available for employee use. Based on current ADA regulations, NIH must provide a minimum of 109 accessible parking spaces solely for handicap parking. As of this response, there are 371 designated handicap parking spaces on campus, which is more than three times greater than required by minimum feedback ADA standards.

Have a question about some aspect of work- In addition, Manual Chapter 1410–Parking Policy also allows for disabled per- ing at NIH? You can post anonymous queries at sons with a valid handicap parking permit or a state-issued handicap placard www.nih.gov/nihrecord/index.htmf (click on the to park in the long-term visitor lots or metered spaces without paying. By add- Feedback icon) and we’ll try to provide answers. ing these 855 visitor spaces that are on the main campus to our 371 designated handicap spaces, NIH has a total of 1,226 parking spaces available to disabled Feedback: So where exactly does the money for persons with properly issued handicap permits. Thus, the available number of the lunch that accompanied the tent show go? accessible spaces is more than 10 times required by the latest ADA requirements We used to be able to attend for free and now it set forth in 2010. costs $7/10. I decided this year that my money was better spent elsewhere. The last time I went Concerning your issue about the curb cut, a work order has been entered request- (and paid), there were way fewer people than ing an assessment of MLP-9’s elevator access to ensure ADA compliance. when it was free. This means those food ven- dors who do this get less exposure which means Executive Leadership less people will know about them and frequent Program Alumni Visit their businesses. ‘Robot Lab’ Response from Christopher Wanjek, Office Graduates of the NIH of Intramural Research: I agree that, this year, Executive Leadership the Taste of Bethesda lunch was not the deal Program recently had it used to be. The event certainly no longer can an opportunity to tour a lab featuring NCATS’ be free; that’s a violation of government rules. ultra-high-throughput The money from customers now goes directly screening robotic system. to the vendors and to the cost of the tent. The ExLP alumni spent a Technical Sales Association (TSA) and the NIH morning learning about R&W help support the event. The TSA helped cutting-edge research at us keep the ticket prices lower in recent years, NCATS and exploring some of the promising translational drug discovery and develop- but the organization suffered from the govern- ment taking place at NIH. ment shutdown last year. Many customers this year paid in advance; so for $7 they received two entrees, a dessert and a drink, which was indeed less money than a comparable meal on the NIH campus. Feedback: Are there enough handicapped park- ing spaces for NIH employees? Answer: No! I broke my leg and am temporarily restricted in my mobility. My husband accompanied me to work on my first day back. Although we arrived at 8 a.m., there was no available employee handicapped parking in the Bldg. 10 parking garage or in MLP-9 just behind Bldg. 10. We had to do stacked parking in MLP-9 and then have my husband push me in a wheelchair through the garage to the elevator, which did not have a curb cut so I had to hop up a high curb just to use the elevator. This is totally unacceptable Ceremony Launches Child Care Bldg. Construction and I am sure that it is in violation of the ADA, Ground was broken for the new Northwest Child Care Center on Apr. 29. The facility which NIH is supposed to abide by. I’m sure I’m is scheduled to open in 2015 with room for 170 children ages 6 weeks to 5 years. On not the only NIH employee with mobility issues hand at the ceremony were (from l) Brian Rabin and Dr. Sheri Schully of the NIH child (permanent or temporary) who has had a simi- care board; Dr. Alfred Johnson, director of the Office of Research Services; Colleen lar issue with parking. While parking is always Barros, NIH deputy director for management; and Tony Clifford, chief engineer for tight at NIH, those who need handicapped the Office of Research Facilities. The project officer for the new building, also known as parking should not be required to improvise Bldg. 23, is Thor Sigfusson. just to fulfill the NIH mission. photo: ernie branson 11 Heavy rain limited attendance at 2014 Bike to Work Day, but the NIH Bicycle Commuter Club and its volunteers nonetheless welcomed the hearty on May 16 in front of Bldg. 1. Registrants (above, l) received event T-shirts. NIAID’s Dr. Bernard Moss (c) was among the undeterred riders. At right, ORS’s Joe Cox (l) receives the Carl Henn Award from R&W President Randy Schools for efforts on behalf of NIH cyclists. photos: bill branson

Bike to Work Day Gets Drenched NIMH’s Jules Asher (l), decked out in rain gear, prepares to Just a week before NIH observed Bike to Work videotape BTWD proceedings. Day on May 16, the U.S. Census Bureau report- ed that the number of people who traveled to work by bike increased roughly 60 percent over the last decade. But those statistics were of no avail on BTWD, when torrential early morning rains dampened attendance at what is usually a robustly sup- ported event. Ironically, skies cleared around The rain did not dampen riders’ 9:30 a.m., precisely the time when the three moods, as this participant proves. NIH pit stops closed up shop for the day. The Census Bureau says that bicycle commuting increased from about 488,000 in 2000 to about 786,000 during 2008-2012. “This is the largest percentage increase of all commuting modes tracked by the 2000 Census and the 2008-2012 American Community Survey,” the bureau said. Below, a representative of Proteus Bicycles prepares fruit smoothies by But rain is no respecter of statistical trend. using pedal power to run a blender. According to Michelle Mejia, transportation quality assurance specialist with the Division Bicycle Commuting Data from the Census Bureau of Amenities and Transportation Services, “We Ÿ The West had the highest rate of biking to work at 1.1 percent and the South had the had 531 people register for [BTWD] and 155 lowest rate at 0.3 percent. passionate cyclists showed up in the rain to Ÿ The median commute time for those who bike to obtain their BTWD T-shirts.” work was about 19.3 minutes. That means that only around 30 percent of Ÿ Men were more likely to bike to work than women the NIH’ers who expected to ride that morn- were. The rate of bicycle commuting for men was ing actually did so. The rest, according to Mejia, more than double that of women, 0.8 percent need not despair of receiving their 2014 BTWD compared with 0.3 percent. commemorative shirts. Those who registered Ÿ Those with for the event can obtain their shirts on Sept. 22 a graduate or at NIH’s observance of Car Free Day. professional degree or higher According to the Census Bureau, while bicyclists and those with still account for just 0.6 percent of all com- less than a high muters, some of the nation’s largest cities have school degree more than doubled their rates since 2000. Port- had the highest land, Ore., had the highest bicycle-commuting rates of biking rate at 6.1 percent, up from 1.8 percent in 2000. to work, at 0.9 The rate in Washington, D.C., is 3.1 percent. and 0.7 percent, respectively. 12 NIH RECORD JUNE 6, 2014