NIH Science Education Programs at Risk

Proposed Reorganization of STEM Programs Threatens Funding for Health and Biomedical Education

Click HERE for the photobook of programs that will be impacted by the proposed reorganization.

On April 10, 2013, the White House submitted a FY14 budget request to Congress that radically reorganizes federally-funded Science, Technology, Engineering, and Math education (STEM) programs across multiple agencies, particularly the National Institutes of Health (NIH), National Oceanic and Atmospheric Administration (NOAA), and NASA.  In the proposal, 266 programs across 13 agencies would be consolidated into 122 programs. The budget proposal identifies the National Science Foundation, the Department of Education, and the Smithsonian as the primary agencies to organize and oversee future federally-funded STEM education efforts.

The following day, NIH held a conference call for all NIH grantees with funding for K-12 and informal science and health education projects. Dr. Larry Tabak, principal deputy director at NIH, announced that NIH is “pausing” funding for these programs. No new grants will be awarded. Non-competing renewals will be funded in FY 2013, but funding after that is uncertain. While increased coordination of STEM education across federal agencies is a laudable goal, several consequences of the proposed changes have profound implications for health and biomedical education in the US.  In particular, the elimination of the Office of Science Education at the National Institutes of Health and the Science Education Partnership Award  (SEPA) and similar science education programs at individual NIH institutes would threaten our national competitiveness, security, public health, and broader understanding of, and support for, science.

The NIH Office of Science Education (OSE) is scheduled to close at the end of September, 2013.  The OSE has had a tremendous impact on health science education through its many programs.  For example, OSE staff have distributed 450,000 Curriculum Supplements to approximately 100,000 educators across the U.S.  Their website receives over one million hits/year. If you are interested in receiving hard copies of their popular Curriculum Supplement series, please contact them at oseATscience.education.nih.gov.

The journal Science, in Wild Cards Remain After Proposed Reshuffle of STEM Education (April 19, 2013; vol 340, p. 258-259), notes the following:

Many science educators say that the proposed cuts would scrap effective programs just as the country needs to be doing more.  ‘”The SEPA program is the face of the NIH to the country,” says a grantee on one of the programs facing the chopping block. “It’s a vehicle for telling the public how NIH is translating science into practice,” says the grantee, who requested anonymity (p. 258).

The Co-STEM Committee at the Office of Science and Technology Policy is scheduled to release a strategic plan in mid-May with additional information.

The following link provides the complete list of programs under consideration to be paused/consolidated/eliminated:

Proposed STEM Education Reorganization Contained in the President’s FY14 Budget Request
Note especially the following list relative to health and biomedical education:

• 30 Clinical Research Training Program HHS
• 31 Curriculum Supplement Series HHS
• 32 NIAID Science Education Awards HHS
• 33 NINDS Diversity Research Education Grants in Neuroscience HHS
• 34 NLM Institutional Grants for Research Training in Biomedical Informatics HHS
• 35 OD Science Education Partnership Award HHS (SEPA)
• 36 Office of Science Education K-12 Program HHS (NIH Office of Science Education)
• 37 Public Health Traineeship HHS
• 38 Science Education Drug Abuse Partnership Award HHS
• 39 Short Term Educational Experiences for Research (STEER) in the Environmental health Sciences for Undergraduates and High School Students HHS

The following are points raised by the SEPA community in response to this development:

The Need for Health and Biomedical Science Education Programs Aimed at Grades K–12 and the Broader Public at the NIH

Health and biomedical sciences for grades K-12 are critical components of STEM education that help to ensure the nation’s capability to prevent disease and improve health. The proposed 2014 STEM education consolidation plan, however, eliminates K-12 and informal health and biomedical science education from its traditional place in the portfolio of the National Institutes of Health (NIH), and, by default, from the national STEM education agenda. No other federal agency supports programs comparable to those that would be lost.

More than 65 NIH-funded, K-12 health and biomedical science education projects currently operate in 40 states. These include “in-person” programs for more than 82,500 K-12 students and 5,750 K-12 teachers each year, and online programs that reach more than 20 million K-12 students and educators annually. NIH-funded exhibitions at some of the nation’s largest museums and science centers reach millions more students, teachers and families. With emphasis on engaging underserved populations, K-12 educational initiatives supported by NIH create thoroughly evaluated, science-rich interactive exhibits, curriculum materials, teacher professional development programs, student and teacher research experiences, and out-of-school learning opportunities. Ongoing NIH-funded K-12 educational programs benefit the nation in the following ways.

• Improve preparation for, and access to careers in medicine, healthcare, biotechnology and biomedical research, with a focus on students from under-represented groups.Address health disparities by increasing access to college and health professions careers for under-served students, who are more likely than their peers to practice in medically underserved areas.
• Build public understanding and support of biomedical research and clinical trials through educational programs that emphasize the relationship between NIH discoveries and their translation into positive health outcomes.
• Encourage and facilitate involvement of biomedical research scientists in K-12 STEM education, and engage the resources of colleges, universities, medical schools and science museums in supporting K-12 STEM education.
• Promote health literacy and better decision-making to address preventable health problems among America’s youth, reduce the burdens of chronic illnesses and infectious diseases, and enable consumers to make sense of genetic and other newly available health information.
• Increase students’ interest in STEM topics through personally relevant examples from health and biomedicine that are aligned with recommendations of the Next Generation Science Standards.

For more than two decades, NIH has invested in the development of human capital and a unique infrastructure that is meeting our nation’s K-12 health and biomedical science education needs. These investments have produced significant, demonstrable outcomes that would not have been possible otherwise. Current K-12 programs sponsored by NIH, including the Office of Science Education, employ rigorous, results-oriented and cost-effective approaches to tackle major national issues, as listed below.

• Jobs: Healthcare and biomedical science are crucial elements of the economy. The US Department of Commerce estimates that healthcare accounts for $1.75 trillion in revenues and employs more than 14 million people (nine percent of the US workforce).
• Provider Shortages: The nation faces an acute shortage of healthcare workers in all areas, and the problem is expected to grow. The American Association of Medical Colleges projects that there will be a shortage of more than 90,000 physicians—including 45,000 primary care physicians—by the end of the decade. About 55 million people already lack access to a physician.
• Wellness and Disease Prevention: According to the Milken Institute, more than half of all Americans suffer from one or more chronic diseases, many of which are preventable. Healthcare spending is projected to reach almost 20% of the US gross domestic product by 2021. Racial and ethnic minorities suffer disproportionately from diseases such as cancer, diabetes and HIV/AIDS, but participate less frequently in programs that could help to reduce disparities.

Without K-12 health and biomedical science education initiatives, our nation will be unable to solve many of its most pressing workforce, economic and healthcare problems.

Download points above as a PDF: NIH-K12
Sources: Fixing the Doctor Shortage (AAMC) - Health Economic Fact Sheet - The Health and Medical Technology Industry in the United States  - Next Generation Science Standards - Milken Institute Center for Health Economics

Fig. 1. Distribution of 2012 Science Education Partnership Awards by State.
Nearly every state will be impacted by these changes.

Taking action:

• Please contact members of:  The House Committee on Appropriations (Particularly members of the Labor, Health and Human Services, Education, and Related Agencies Subcommittee) with your concerns.
  This is especially important if you belong to a district which a member of the Committee represents.
•  Additionally, contact members of the House Committee on Science, Space and Technology.

Additional Resources
Please contact us at jchowningATnwabr.org with suggestions and corrections

• NIH FY 2014 budget (http://officeofbudget.od.nih.gov/pdfs/fy14/fy 2014_overview.pdf); funding for the SEPA program is specifically not included in the budget (see budget summary on page 35).
• The Office of Science Technology Policy (OSTP) issued Preparing a 21st Century Workforce: Science, Technology, Engineering, and Mathematics (STEM) Education in the 2013 Budget, which highlights changes in STEM education proposed in the presidential FY14 budget.
• OSTP 2-page overview of FY2014 science budget and goals
• GAO report to Congressional Requesters (January 2012)
  Strategic Planning Needed to Better Manage Overlapping Programs Across Multiple Agencies
• Subcommittee on Early Childhood, Elementary, and Secondary Education, Chair: Rep. Todd Rokita (R-IN), “Raising the Bar: Reviewing STEM Education in America” (April 10, 2013)
• Government Strategy Needed to Better Manage Overlapping Programs, George Scott, Government Accountability Office (April 10. 2013)
• ED Week: Obama Budget Features New Plans for STEM, High Schools (April 12, 2013)
• AAAS’s news release about the budget proposal

Cultivating Connections…Inspiring the Future

NWABR’s Annual Fundraising Dinner: Come Celebrate with Us!

June 4, 2013
415 Westlake Ave N, Seattle, WA

Save the date! Reserve your tables and seats!

NWABR’s annual fundraising event is a celebration of our life sciences community that brings together over 300 researchers, educators and students from across the Pacific Northwest region. We are privileged to honor three visionary leaders, each of whom has created cultures committed to inspiring our future scientists.

Leroy Hood, MD, PhD, President, Institute for Systems Biolology
Susanna Cunningham, PhD, RN, FAAN, Professor, School of Nursing, University of Washington
Carolyn Hovde Bohach, PhD, Director, IDeA Network of Biomedical ResearchExcellence, University of Idaho

Program:
5:30 p.m. – Reception featuring the Student Bio Expo winners
6:30 – 8:30 p.m. – Dinner & Program

If you have any questions, please contact info@nwabr.org. Come celebrate with us!

Rally for Medical Research–View Live!

On Monday, April 8 at 8 am. Pacific Time,  our NWABR community is proud to join over 200 partner organizations across the country in the Rally for Medical Research.  To watch the Rally live, click HERE. To follow the activities on Twitter, connect with #RallyMedRes. Never before have so many in the medical research community come together in such a public way to express support for NIH.

Youth Ethics Summit: Science Saturday for Students

NWABR, University of Washington (UW) Department of Bioengineering, and UW Microfabrication Facility hosted 51 high school students (one made a special trip from Idaho) from 22 schools at the University of Washington on Saturday, March 2. Featuring laboratory tours, UW student showcase, liquid nitrogen ice cream, and breakout sessions on global health, artificial organs, computer science and nanotechnology, the day was full of hands-on activities and interactions with bioengineering students and professionals.

These are a few statements from our participants that demonstrate the impact of this day-long event:

“The demonstrations were the best, I thought, but the explanations taught me how everything ties together. The science is cool, the outfits were wacky and the whole thing was very well-done and enjoyable.”

“It showed me that I can incorporate my love for biology, genetics, and problem-solving into one field.”

“I loved [the Artificial Organs] breakout session. The need for bioengineering in the artificial organ area was not one that had previously occurred to me. I can see myself working in that field.”

“I am interested in medicine or sciences and this field works on technology and methods to improve health of people around the world.”

“I learned a lot and enjoyed every moment. It was highly interesting and involving. I am now more interested in bioengineering than I ever thought I’d be.”

Falling Off the “Fiscal Cliff”: As Funding Cuts Loom, Americans Are Willing to Pay for Biomedical Research

As pundits project and partisans dig in on Capitol Hill, Americans remain committed to investing in biomedical research, and are even willing to spend more of their tax dollars to advance science in their communities. According to a new national public opinion poll commissioned by Research!America:

• More than 50% say they would be willing to pay $1 more per week if the dollars would go to medical research – even in these tough fiscal times.
• More than three-quarters (78%) say that it is important that the U.S. work to improve health globally through research and innovation.
• Nearly 70% believe that the federal government should increase support for programs and policies that would increase the number of young Americans who pursue careers in science, technology, engineering and mathematics.
• 68% say it’s important that the federal research and development tax credit is made permanent.

How might falling off the “fiscal cliff” affect biomedical research in Washington State? The biomedical research sector provides thousands of jobs in Washington: pharmaceutical (2,490); medical device (7,760); research, testing, and laboratories (15,088); and overall private sector (2,429,884).  Further reduction in NIH and NSF funding to biomedical research could affect this sector and reduce employment opportunities nation-wide, forcing job-seekers to relocate or potentially discourage students from pursuing scientific careers.

Current NIH funding has designated Seattle as the hub for comparative-effectiveness research in cancer. The Fred Hutchinson Cancer Research Center, Group Health Research Institute, and the University of Washington School of Public Health are leading projects in cancer genomics, cancer diagnostics, breast imaging, and cancer screening. Results from these projects will provide vital information in diagnosis, treating, and communicating information about cancer to medical professionals, patients and their families, and health insurance companies. The threatened reduction in funding could impact these critical programs and may delay evaluations of testing and treatments for cancer patients. Without continued biomedical research funding in Washington—and across the U.S.—we compromise our ability to evaluate cancer diagnostic tools, screening tests, treatments, and a balanced assessment of cost and benefit.

Time is running out on Capitol Hill. While it’s absolutely necessary to reduce the deficit, more spending cuts that hinder medical progress are harmful to public health, the economy, and global innovation. The Northwest is a national leader in biomedical research and innovation, and our representatives can still save thousands of jobs, and $70 million in grant funding in Washington alone. Reach out to our lawmakers today—before they adjourn for the holiday—and count yourself among the majority of Americans who take action to preserve and advance biomedical research funding.

NWABR Urges Congress to Preserve Biomedical Research Funding

Sequestration could cost WA at least $70 million in grant funding

Now that the election is finally over, it’s easy to be distracted from the ongoing work of the current congress, and the looming threat that budget sequestration poses to the biomedical research industry. The Budget Control Act of 2011 requires that across-the-board cuts to be applied to a large portion of the federal budget on January 2, 2013, unless Congress reverses it. For domestic programs, around $39 billion in cuts would be applied to “discretionary” programs, which include the National Institutes of Health (NIH) and the National Science Foundation (NSF).  According to a United for Medical Research report, if NIH funding is cut by 7.8% as part of budget sequestration, the state of Washington will be hit especially hard, with a loss of 1,184 jobs and $72.2 million in grants supported by this funding. And that is just the beginning.

This week, members of Research!America, a nonprofit advocacy alliance, are headed to Capitol Hill to make the case that sequestration is harmful not just for biomedical research, but also for our economy. As part of their Save Research campaign, NWABR was proud to sign a letter urging congressional leaders to reject any deficit reduction proposals that would cut research funding or hinder incentives that support biomedical innovation.

The full letter is posted below. Please take a moment to reach out to your congressional delegation and ask them to preserve funding that will help combat disease and spur private sector innovation in the Northwest and beyond.

Dear Mr. Reid, Mr. McConnell, Mr. Boehner, and Ms. Pelosi:

As advocates for biomedical and health research, we are writing to urge you to refrain from deploying deficit reduction strategies, like sequestration, that would slow medical progress.

Our nation leads the world in biomedical and health research, a function of public sector support and private sector ingenuity. The National Institutes of Health (NIH) is unrivaled in spurring the basic discovery that lays the path for private sector innovation. Peer-reviewed NIH funding reaches all 50 states and congressional districts, spurring discovery at universities, hospitals, small businesses, and independent research institutes. In fact, NIH-supported research has:

• Supported nearly 500,000 jobs in 2011 in every state
• Generated $62 billion in economic activity in 2011
• Helped increase life expectancy from 47 years in 1900 to 78 years in 2009

But this is not just about NIH.  The National Science Foundation (NSF), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDC) and the Agency for Healthcare Research and Quality (AHRQ) all provide a positive return on investment to our nation, protecting American lives and promoting American prosperity.

• NSF’s grant portfolio is designed to identify and pursue the best scientific opportunities across the spectrum  of scientific disciplines, including biomedical research.
• FDA is a key conduit between medical discovery and medical progress, laying the path for safe and effective  medical products to reach the marketplace.
• CDC conducts and supports the public health research needed to contain disease outbreaks, promote wellness, and in other ways provide basic supports for a safe and healthy society; and
• AHRQ combats entrenched and insidious problems in our nation’s health care system – like preventable medical errors and needless administrative red tape — that take lives and inflate the cost of taxpayer funded health programs and private insurance alike.

Disinvesting from biomedical and health research – and the infrastructure and expertise needed to conduct it – would contravene the goal of deficit reduction. This research is one of the fundamental underpinnings of our economy, a reality well understood by other nations, which are ramping up their investment and building out their research infrastructure.  Research is a catalyst that creates businesses large and small, and generates jobs in research, manufacturing, distribution, exports, health care and a host of other sectors. Those businesses and jobs supply federal revenue needed to reduce the deficit.

In addition, research can help stem runaway federal healthcare spending, which is driving our deficit. While new treatments may require additional cost at the outset, research has shown the offsetting effects of reduced hospitalizations, fewer visits to providers, reduced home care, a reduction in the Social Security disability roles, and improved productivity.  As you well know, the cost of treating diseases like Alzheimer’s, Parkinson’s and other diseases are exploding. There is no high-impact alternative to research as a means of addressing this crisis.

When it comes to the fiscal health of our nation, biomedical and health research are part of the solution, not part of the problem.  Whether it is appropriations policy or entitlement and tax reform, we urge you to discard any proposal that cuts funding or mutes incentives for public- and private-sector supported medical innovation.   Compassion and pragmatism intersect in the decision to do so.

Thank you for your consideration.

Join Us: May 8 for our next monthly Community Conversation!

Topic: “Is animal research justified?“

A discussion co-facilitated by Cindy Pekow, DVM; Chief, Veterinary Medical Unit, VA Puget Sound and Joan Griswold, MIT; Curriculum Design Lead, NWABR; 2012 Annual Fundraising Dinner Honoree

click here to register

When:   May8, 2012
Time:     Beginning at 5:30 pm, until 7:00 pm
Cost:      $5 at time of Registration
Where:  415 Westlake, Seattle, WA at Kakao Coffee and Chocolate in the South Lake Union neighborhood
Eats:      NWABR-hosted with appetizers and beverages

Learn more about our Community Conversations at our web site, or contact Jen Wroblewski at jenniferw@nwabr.org.  See you there!

Student Bio Expo seeks creative and curious minds…

… with scientific savvy to judge unique projects on May 24th! Judge registration is now open. Please check out the Expo Judge page for more information (http://nwabr.org/community/student-bio-expo/judges). We not only invite members of the community with a science background, but also those who are creative and have a curious mind.

We have 13 categories that need judges (Art, Career and Industry, Drama and Dance, Lab Research, Molecular Modeling, Music, Multimedia, Teaching, Website Design, Creative Writing, Journalism, SeaVuria (formerly Global Health), and SMART Teams (advanced molecular modeling)), so there’s something for everyone. Join us for a unique science fair experience!!!

Feel free to contact Jenn Pang (jpang@nwabr.org) for more information.  See you there!!!

Congratulations Jeanne Chowning on 10 wonderful years!

Our own Jeanne Chowning has been with us now ten, wonderful years. The words in this graphic are those Jeanne’s peers and coworkers have used to describe her, and her work in their notes and letters of appreciation!

Got Stress? Time to Quit- a Seattle CityClub public lunch forum

Just in time for the stressful holidays….Join NWABR and Seattle CityClub for our Wednesday November 30th public forum with lunch! This will be a timely discussion with local and national experts on STRESS–what causes it, what it does to us and how to reduce it.

Details

What: Got Stress? Time to Quit. Public forum and lunch.
When: Wednesday November 30th. Doors open at 11:30. Program 12:00-1:30pm.
Where: Town Hall– 1119 8th Ave
Cost:
Buffet Luncheon: $20/CityClub Members | $25/Guests and co-presenters | $30/General public

Coffee & Dessert: $12/CityClub Members | $15/Guests and co-presenters | $18/General public
Register: http://www.SeattleCityClub.org to register or call 206-682-7395!

Join us for Life Sciences Research Weekend — Nov 4 – 6

Experience science at its finest – hands-on, exploratory, and just plain fun!

NWABR and Pacific Science Center invite you to the 5th annual

Nov. 4-6 – Friday through Sunday at Pacific Science Center

Friday 10am-4pm, and Saturday and Sunday 10am-5pm.

Life sciences companies and research institutions from around the state will host interactive exhibits that reflect the cutting edge research that is taking place in our state.

If you want to meet scientists that have great passion for the work they do, plan to attend! Life Science Research Weekend events are included with regular Pacific Science Center admission.

For more information, visit http://www.nwabr.org/community/life-sciences-research-weekend

This program is made possible by a SEPA grant to Pacific Science Center from NCRR at National Institutes of Health.

The Body Politic: The Battle Over Science in America

Tuesday, October 25, 2011
3:30-4:45p.m.
Hogness Auditorium, Health Sciences Center, University of Washington

Dr. Jonathan D. Moreno, Ph.D.

David and Lynn Silfen University Professor
University of Pennysylvania

Dr. Moreno offers an engaging history of the intersection between science and democracy in American life, a reasoned analysis of how different political ideologies view scientific controversies, and a vision for how the new biopolitics can help shape the quality of our lives.

More information: http://depts.washington.edu/hserv/cal?3251

Dr. Moreno was interviewed this October 19th on FOX News about our preparedness to sustain another anthrax style bio defense attack.  His recommendation?  Invest more in biotechnology.  http://www.foxnews.com/on-air/happening-now/index.html#/v/1222304472001/anthrax-attacks-10-years-later/?playlist_id=86919

Dr. Moreno also raises key issues in this brief interview in the Atlantic Monthly on globalization and neuroscience:
http://www.theatlantic.com/life/archive/2011/10/a-conversation-with-jonathan-d-moreno-bioethicist-and-professor/246013/

For more information about the MHA’s Dialogues in Ethics, Health Services, and Science initiative, contact:  Kathryn M. Hinsch, Clinical Faculty, at khinsch@uw.edu or call 206-200-1101.

Call for Public Discussion: Do You Have a Duty to Participate in Medical Research? Series Premiere Tuesday October 18th

Join your neighbors and colleagues in a conversation–where all experience is valid and valued–where the knowledge we create together is greater than anyone’s alone.

In South Lake Union, NWABR and our partners at 415 Westlake (Union and Kákao) are connecting diverse members of the public through monthly Community Conversations. Given the concentration of biomedicine and growing residential culture in this neighborhood, it is natural to create these informal discussions at the interface of medicine, ethics and research.

The first topic is “Do You Have a Duty to Participate in Medical Research?” and the series premieres Tuesday, October 18th. Learn more about our Community Conversations at our web site.

When:   Tuesdays October 18, November 15, December 13
Time:     Beginning at 5:30 pm, until 7 pm
Where:  415 Westlake, Seattle, WA at Kakao Coffee and Chocolate in the South Lake Union neighborhood
Eats:      NWABR-hosted with appetizers and beverages

Contact Jen Wroblewski at jenniferw@nwabr.org for more information.  See you there!

Share this:

We are hoping that our students will come away with a better understanding of how drugs and treatments are developed, an appreciation of the value of research for health, and with opportunity to learn about the broad range of career possibilities in biomedical research-related fields. It is very important to us that our students learn how ethics intersects with biomedical research, especially in how research is conducted. They learn about ethical guidelines for research and how those guidelines have been developed. By meeting and interacting with individuals who care for animals needed for research, or who conduct clinical trials of new vaccines, they not only put a human face on research, but they perhaps take one step closer to imagining themselves conducting research.

– Jeanne Ting Chowning, NWABR Director of Education

Student Research Fellows in the Media

News media, NWABR members, and social media have taken note of our Summer Student Research Fellows in recent days. Below are a series of Twitter updates linking to blog posts and articles — read all about it!

cool! RT @nwabr: Students meet researchers and tour labs at Fred Hutchinson Cancer Research Center with NWABR pnw.cc/5vWsH—
Miller Lab (@millerlab) July 05, 2011

Great program for future researchers @WSUSpokane – Students learn about biomedical research bit.ly/lMiOpy #wsu #gocougs—
WSU News (@WSUNews) July 05, 2011

We've blogged our Student Research Fellows East bit.ly/pprwQe & for more see bit.ly/lMiOpy thanks! @WSUNews—
NWABR tweets (@nwabr) July 05, 2011

+1 RT @millerlab: cool! RT @nwabr: Students meet researchers and tour labs at Fred Hutchinson Cancer Research Ctr pnw.cc/5vWsH—
Adrienne Roehrich (@fiainros) July 05, 2011

Thanks everyone! Connect with us on Twitter @NWABR and click here for much more information about NWABR Student Research Fellows.

Science and the Human Heart

This video features three recent NWABR events: Youth Ethics Summit 2011, hosted at the University of Washington Institute for Stem Cell and Regenerative Medicine, then Life Sciences Research Weekend 2010, where hundreds of biomedical researchers met thousands of students, children, and families at Pacific Science Center, and finally Student Bio Expo 2011, where high school students presented art and science projects in categories ranging from music to molecular modeling to global health.

These educational programs and more are funded by the National Institutes of Health (NIH), the National Science Foundation (NSF), our members, and contributors like you. Donate to support science outreach and education at http://nwabr.org.

NWABR Members Speak Up For Research

These two exceptional editorials from leaders in the Oregon Health and Science University community stand out for their thoughtful approach to advancing public understanding of biomedical research.

Please read, share, and comment:

Youth Ethics Summit 2011 :: Stem Cells :: Science and Ethics

On April 9, 2011 the Youth Ethics Summit brought together students from across the Puget Sound region to learn about topics related to ethics, medicine, and biomedical research that are of special relevance to young people.

Presented by NWABR and UW’s Institute for Stem Cell and Regenerative Medicine (ISCRM), this year’s summit focused on stem cells and featured tours, panels, and breakout discussions. The Summit provided an opportunity for students from different schools to meet and to participate in discussions and presentations about ethics in science issues.

Students Say

Students who experienced the Summit said:

• I learned just how much control we have/might have soon. Knowing where to draw the line isn’t easy, and it’s something we all need to discuss and understand in order to make wise choices as individuals and as a society.
• We were able to express our own ideas and see what other people thought about them … the discussions we had in our breakout groups were very thought-provoking … listening to different view points on things helped me learn a lot more about them.
• The tours gave me insight on what real life stem cell research would be like and how it would be to work in a lab in the future.
• It was absolutely amazing going into three different labs focusing on the application of stem cells, the stem cells themselves, and the use of robots in research. The groups were small, we had the opportunity to look at both embryonic and induced pluripotent stem cells through microscopes, and the researchers were all extremely informative.
• In the laboratories we toured, I saw myself in the scientist gown, handling the different machines.
• It was a wonderful learning experience that I would recommend anyone who is interested in bioethics … I loved the chance to meet similar-minded teens in the Seattle-area and talk about this fascinating topic.

Stem Cells 101

We began with a brief presentation of “Stem Cells 101″ by Professor Tony Blau, MD, Director of the Institute for Stem Cell and Regenerative Medicine.

“If you took a drop of blood from my finger, put it on a glass slide, smeared it and stained it and looked at it under the microscope, you’d see different types of cells, including what?” Blau asked. Hands shot up, and Blau took three fast answers, one each from three students: white blood cells, red blood cells, platelets. “And they would look obviously different from each other,” Blau continued, describing what each looks like under a microscope, “but they all come from the same mother cell, a stem cell.”

Dr. Tony Blau, Professor of Medicine, Hematology, Adjunct Professor of Genome Sciences, and Co-Director, Institute for Stem Cell & Regenerative Medicine, University of Washington School of Medicine

In each of us, we might have a trillion cells in our blood, but we have about 10,000 blood-generating stem cells. “Where are these stem cells?” Blau asked and another student answered: in the bone marrow.

The professor next defined leukemia (cancer of the blood or bone marrow) and one life-saving treatment for it, dependent on stem cells and developed “next door” at the Fred Hutchinson Cancer Research Center. Stem cell transplantation with bone-marrow-derived stem cells was led by Dr. E. Donnall Thomas, whose work was recognized in 1990 with a Nobel Prize.

Dr. Blau explained the basics of hematopoietic stem cell transplantation, of regenerative medicine as studied at the ISCRM, and he introduced what we would see for ourselves, next — in tours of several research labs on campus at UW South Lake Union.

Tour One: Tony Blau Lab – cancer biology and stem cells

There are about 500 researchers at UW South Lake Union. Neighbors include the Seattle Cancer Care Alliance, Seattle Childrens’ Research Institute, Seattle Biomedical Research Institute, Novo Nordisk, PATH, Fred Hutchinson Cancer Research Center, et al.

Upstairs at his lab’s front door, Dr. Blau pointed out a few notable neighbors in biomedical research in Seattle’s South Lake Union neighborhood.

Researchers Tony Blau, Chris Miller, and Kyle Rattray of the Blau Lab

Researchers Kyle Rattray and Kathy Davidson at the Blau Lab

Tour Two: Mike Laflamme Lab – cardiovascular research

Professor Laflamme’s lab researches cardiac applications for human embryonic stem cells, including repair and regeneration of ventricular, atrial, and other cells from embryonic stem cells.

Professor Mike Laflamme, Pathology, Molecular and Cellular Biology, University of Washington

Researcher Jay Gantz, UW Bioengineering

Tour Three: Tim Martins, Co-Director of the Quellos High Throughput Screening Core - screening molecules for drug development

Dr. Tim Martins, Co-Director welcomes us to the Quellos High Throughput Screening Core, full of the robotics and automation which have vastly improved biomedical research with improved speeds for identifying therapeutic drug candidates.

Dr. Martins was asked about making mistakes in experiments. He replied "I make mistakes, but I'm not afraid to make mistakes," while explaining failure rate in research and the importance of confidence.

Dr. Tim Martins with ready answers on our tour

Robots! at the Quellos High Throughput Screening Core

Hands-on with Planaria and Play-dough

After our tours and lunch, we enjoyed hands-on activities with planaria and Play-dough — to model human embryonic development.

Dr. Reitha Weeks, PhD, Program Manager for Science Outreach at NWABR introduces planaria

Planaria are “the regeneration experts” explains Reitha Weeks of NWABR — if you separate one worm into 279 pieces, they grow into 279 worms!  Planaria also serve as model organisms for understanding human stem cells.

NWABR offers resources for teaching about biomedical research and ethics, including our popular Stem Cell unit with “Plenty of Planaria” to model stem cell function, development, and the complexity of tissue regeneration.

The curriculum is geared towards high school students and available for download free of charge.

Microscope, camera, and monitor loaned to us by Leica Microsystems, Inc. Thank you!

Next up, modeling early embryo development — with play-dough!

Play-dough Egg and Sperm

Jeanne Chowning, MS, Director of Education at NWABR leads the activity

Students in Dawn Tessandore's AP Biology class

Breakout Groups: Ethical Issues in Stem Cells

After the above activities, we broke out into groups to discuss ethical issues more closely. A few of the groups were photographed, as below. Group leaders and subjects included:

• TONY BLAU, MD – Stem Cell Treatments: Considering the risks and benefits of testing stem cell treatments in humans.
• DAVID EMERY, PhD – Embryonic Stem Cells: How far should we go in seeing if they can grow into embryos?
• ERICA JONLIN, PhD – Savior Siblings: “My Sister’s Keeper” – what if you were a genetic “designer baby” created to save your sick sister?
• KATHY DAVIDSON, PhD – Embryos and Research – Creation and Donation: Should researchers be allowed to encourage couples to donate embryos?
• KYLE RATTRAY, MD/PhD Program – Social Justice: Disease Research and Stem Cells: What diseases should be prioritized in stem cell research?
• CHRIS MILLER, PhD – Knowing Your Future: What Can Your DNA Tell You? How much do we want to know about the relative risks of what potentially lies ahead for us?

TONY BLAU, MD -- Stem Cell Treatments: Considering the risks and benefits of testing stem cell treatments in humans

KATHY DAVIDSON, PhD -- Embryos and Research - Creation and Donation: Should researchers be allowed to encourage couples to donate embryos?

KYLE RATTRAY, MD/PhD Program -- Social Justice: Disease Research and Stem Cells: What diseases should be prioritized in stem cell research?

Youth Ethics Summit 2011 was blogged by Brian Glanz for NWABR

Photography by Mohini Patel Glanz.

Youth Ethics Summit 2011 was presented by:

and

This program was supported by a Collaborations to Understand Research and Ethics (CURE), 1R25RR0251131, a Science Education Partnership Award from the National Center for Research Resources. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Research Resources or the National Institutes of Health.

High School Science Cafés

On February 18, 2011, Project Lead the Way students in Dr. Jeff Shaver’s Principles of Biomedical Science class at Cleveland High School organized and executed the inaugural Café for 50 students and 9 teachers.

Download a full press release on the new Cleveland High School Science Café (PDF).

Click for more information about NWABR-sponsored junior science cafés

You can also click the collage on the right for a larger version, sized for a laptop desktop background image.

Henrietta Lacks: Ethics at the Intersection of Health Care and Biomedical Science

Dr. Ruth Faden

The 2011 Charles W. Bodemer Lecture was given by Dr. Ruth Faden, PhD, MPH, of the Johns Hopkins Berman Institute of Bioethics. Several NWABR staff attended and offer this account of the lecture, “Henrietta Lacks: Ethics at the Intersection of Health Care and Biomedical Science.”

Dr. Faden lectured in three segments:

1. Relating the experience of Mrs. Henrietta Lacks and her children as chronicled in The Immortal Life of Henrietta Lacks by Rebecca Skloot. Faden is friends with Skloot, as she disclosed. Included in this segment: how HeLa cells came to be.
2. Ethical considerations of consent and compensation raised by the story.
3. Examination of the story through a social justice lens.

Note: We’ve bolded ethical questions below, for emphasis.

1. About Henrietta Lacks

A poor black woman, undereducated and living in Baltimore in the 1940s, Lacks had been living with her husband, Day (David) and her 5 children while hiding a great deal of abdominal pain. Finally in 1950 she asked Day to bring her to Johns Hopkins Hospital, the only regional hospital where African Americans could receive treatment. Diagnosed with cervical cancer in February 1951, she received cervical radiation, which was the gold standard treatment of the day, under general anesthesia.

Ongoing research at Johns Hopkins by two doctors played a large part in the story: Dr. Richard TeLinde, head of gynecology and a cervical cancer expert, was researching whether different types of cervical cancer were interrelated. Dr. George Gey, head of tissue culture, had been trying for decades to grow an immortal cell line which could be used as a standard research tool. In their respective research pursuits, both Dr. TeLinde and Dr. Gey routinely used tissue samples which had been removed from patients who came to Hopkins for treatment. Henrietta Lacks was one of these patients.

Faden points out that the cervical tissue samples were not part of Mrs. Lacks cancer treatment and that in keeping with the practices of the time, Mrs. Lacks was never asked for permission. Dr. Gey was offered some of the tissue to contribute to efforts to grow the first human cells outside of the body (called tissue culture).

After just 3 weeks of trying to grow Mrs. Lacks’ cells in culture, it was clear to Dr. Gey that these cells would be the very first immortal human cells. In keeping with his system of using the first two letters of a patient’s first and last name, Dr. Gey labeled the cells “HeLa.”

Since that time these cells have made remarkable contributions to medicine including development of the polio, smallpox, and HPV vaccines, and cancer treatments, and over 80,000 medical publications. On October 4, 1951 Henrietta died without ever knowing the breakthroughs she helped provide.

Mrs. Lacks’ children and husband didn’t know that her cells were taken, bought, sold, and used — until 20 years later when her actual name was made public, without notifying her family, in the 1970’s.

Click here to view a slideshow from Skloot’s website, with photos from Lacks’ life.

Neither Johns Hopkins nor the doctors profited directly. In fact, Dr. Gey gave the cells internationally to anyone who wanted them. That isn’t to say that they did not benefit in recognition and professional reputation.

Other people have made money on HeLa cells. You can purchase them today from cell culture companies. The Lacks family never received compensation for the commercialization of HeLa cells. The family has remained poor and to this day has inconsistent health care insurance.

2. Ethical considerations still relevant today

Tissue donation is not hypothetical or a thing of the past. Anytime someone has an “opsy”—as in biopsy—or an “ectomy”—as in tonsillectomy, tissue is being removed from their body. What happens to that tissue once it has served its medical purpose of diagnosis or treatment? It can be discarded as medical waste or it can be used for research.

Creation of biobanks or biorepositories — see our previous blog posts from the event, “Do You Know Where Your DNA Is?” on biobanks — from huge sets of human tissue samples, is creating great expectations of what scientists will be able to accomplish toward predicting, preventing, and personalizing medical breakthroughs. Breakthrough hopefuls include diagnostic tests and individualized treatments for chronic disease like diabetes and heart disease.

Should patient consent be obtained for research purposes if 1) once utilized for medical purposes, the tissue would be sent to medical waste anyway? if 2) extra tissue is taken solely for research purposes, as in the case of Mrs. Lacks?

Should patients re-consent every time their tissue is used for a different study? How can patients with tissues in biobanks consent to future research that has not yet been conceived?

Should people be compensated if anyone benefits from marketable products derived from the human body? How should people be informed about discoveries resulting from the use of their tissues?

Dr. Faden quickly moved to her passion — how to examine these ethical questions through the lens of social justice.

3. Social Justice is an important lens through which to examine the ethics of science

The Twin Aims Theory of social justice is 1) “improvement of human well being” and 2) “combating densely woven patterns that compromise multiple core elements of well being.” Faden listed the core components of well being and what she calls the Essential Elements of Well Being:

1. Personal security
2. Reasoning capacities with which to think about the world
3. Respect of others as moral agents
4. Health
5. Affection and attachment
6. Self-determination (the ability to exert some control over the path of one’s own life, free from the tyranny of other people or conditions)

Dr. Faden next introduced ‘counterfactuals’ otherwise known as “What If” statements:

What if 1) the Lacks family had received compensation? What if 2) Mrs. Lacks was an affluent white person with great health insurance? Would the story still raise questions about social justice? Dr. Faden argues YES.

Of course monetary compensation would have made a difference for the Lacks family; however, it would have done little to adjust for the systemic injustices of being poor and black. (Note from Faden: Cases where someone’s body is a source of commercial value are extremely rare. More often, medical discovery is the result of hundreds of thousands of specimens and data.)

If Henrietta Lacks had been white and wealthy, Faden feels that the systematic injustice of being “disrespected by biomedical research” likely would not have been different. Mrs. Lacks’ family was in the dark; in keeping with the practice at the time, Dr. Gey and Johns Hopkins did not tell them anything about the HeLa cells for twenty years (if you read the book, you’ll note that they only told her family because they accidently learned about it from a young Hopkins researcher who happened to be a distant cousin and was using the cells in his research. He put two and two together and realized the connection when he was visiting his family).

And this is what Faden means by lack of respect. Deborah, one of the Lacks children who is featured in the story, describes her worry about her mother’s cells and her inability to learn about what happened to the cells—and by association to her mother. This worry and insecurity is what causes disconnect, disrespect, and ultimately injustice.

Dr. Ruth Faden wrapped up her presentation with what may have been the most interesting examination — The Collective Action Problem of the current profit model that drives scientific discovery. Also called the Reciprocity Model, it acknowledges that even though I may not directly benefit my contribution and you may not directly benefit your contribution, our communal contributions may benefit each other.

Without communal action toward a common goal, the goal will not be realized. Advancing medical progress faces this problem. In medical research and biorepositories in particular there is need for a critical mass of people to donate tissue, blood, and health data. Not just any people—all people from all ethnic and racial backgrounds. Without access to many samples there will not be benefit for anyone. This was her call to public participation, the 4th “P” of P4 Medicine, as coined by Seattle’s Leroy Hood of the Institute for Systems Biology.

Do you want to participate in research? Sign up as a volunteer with ResearchMatch.org, an anonymous volunteer matching service funded by the National Center for Research Resources, part of the National Institutes of Health. Explore opportunities to donate blood and tissue for research. Participate in public dialogue about medical research and ethics.

Faden envisions a society in the near future without the expectation of monetary compensation for research participation, because we understand that medical progress will benefit everyone. Do you?

Charles W. Bodemer

Who was Charles Bodemer and why have an annual lecture series?

Bodemer was the founder of the University of Washington School of Medicine, Department of Bioethics & Humanities, serving as chair from 1967 to 1985.

Bodemer “had a distinguished career as a research scientist before dedicating his energies to his other love: the history of medicine.”

For more, please see http://depts.washington.edu/bhdept/conedu/Bodemer.html.