User Centric Makes All the Difference at NWABR and Quorum Review IRB Conference

by Marie-Térèse Little, PhD

The 2015 Revolutionizing Informed Consent Conference session topic Emerging Trends in Research given by Mr. John Wilbanks was especially riveting. Mr. Wilbanks is Chief Commons Officer at Sage Bionetworks and he has focused his career on advancing open content, open data and open innovation systems. With a bridge grant from the Robert Wood Johnson Foundation, Sage Bionetworks developed and maintains the Participant-Centered Consent (PCC) toolkit . The toolkit was built for architects of clinical studies who are interested in leveraging technology and employing electronic consents in a mobile context with the goal to make their informed consent user-centered, rather than document-centered. Wilbanks demonstrated that the publicly available PCC toolkit contains the building blocks of a visual, interactive approach to informed consent that creates visual summaries of consent forms mapped to key underlying text, for use in software or print. Visual summaries can assist with clarifying key research concepts so the participant is engaged, well-versed and cognizant of the risks, benefits and alternatives of a clinical study. A mixture of icons and text labels are designed to convey the essential concepts of a study in a more intuitive manner facilitating a meaningful and fulsome conversation about informed choices. The toolkit is used to develop mobile-centric informed consent processes for the collaborative clinical studies involving Sage Bionetworks. The tools are used to assist the learning in the consent process and include: tiered information accessed by the participant, pictorial dominant first tier information (with icons, text slugs and labels), a text dominant second information tier and a short learning assessment. The PCC toolkit was developed with the Electronic Data Methods (EDM) Forum, a project funded by the US Agency for Healthcare Research and Quality as a part of the Collaborative Methods Project. With this framework, one can only imagine our participants eagerly participating with fascination and engrossed in this engaging e-consent informed consent process.

 

Marie-Térèse Little, PhD is a volunteer member of Island Health clinical research ethics board on Vancouver Island, B.C. She worked at the Fred Hutch developing novel strategies for reduced intensity bone marrow transplants and she now lives in Victoria, BC with her family. Marie-Térèse is the founder and chief consultant at 4th Dimension Biomedical Research Communications (www.4Dbrc.com) where complex bio-medical and scientific information is distilled into clear, meaningful and comprehensible communications. Stay tuned for additional featured speaker sessions.

Speak Up For Research Education Fund

How did science hook you?

Strawberry DNA extraction

Strawberry DNA extraction

Did you have a teacher whose lab was your favorite place to hang out in high school? Were you a biology graduate student who fought for better treatment of animals and found a calling in animal care or health ethics? Did you travel and see suffering that would be diminished with the right vaccination?

I got hooked as a member of the St John Ambulance Brigade in New Zealand where as a teenager I was able to volunteer in ambulances, hospitals and rest homes and saw evolving treatments driven by research.

I’m both excited about science and concerned about its future. I see a growing distrust in biomedical research, waning science literacy and an almost perverse celebration of anti-science sentiments; this all of course at a time when new biomedical research breakthroughs are occurring on a daily basis. Here at NWABR, we see the possibilities of science and are excited by the opportunities for young people to get hooked into fascinating and important science fields—but we also see a gap in the science education for the general public that results in twisted logic, misinformation, hijacked conversations and bad policy decisions.

NWABR bridges that gap, combats that misinformation, and leads spirited and informative conversations about complex issues related to biomedical research.  And we need your help.

Today, I’m asking readers you to join our newest fundraising initiative: the Speak Up For Research Education Fund.  Over the last two years more that 1,400 people have joined NWABR at a series of events:

  • Perhaps they volunteered for our popular Bio Expo that engaged close to 700 high school students;
  • Or they attended a Community Conversation on the ethics of end of life care, or vaccinations, or direct to consumer genetic testing.
  • Perhaps they are a professional dedicated to ethical protections for humans and animals in research and you attended one of our research conferences;
  • Or they attended our Security Conference and joined colleagues from across the country who are committed to keeping scientists, their facilities and their work safe.

This campaign to create a Speak Up For Research Education Fund is about protecting the belief and trust in biomedical research and ensuring that this work can continue robustly into the future.

Join the Speak Up For Research Education Fund and make a donation today by visiting:  https://donatenow.networkforgood.org/nwabr?code=Speak%20Up%20For%20Research

Alternatively you can send a contribution to the Northwest Association for Biomedical Research, 2633 Eastlake Ave E., Suite 302, Seattle WA 98102.

All supporters will be thanked by name in our public materials, unless of course they request to make an anonymous contribution.  All contributions will also be acknowledged with a tax deduction receipt.

This is a vital time for science – with the support of the Speak Up For Research Education Fund we can continue and expand the work of engaging students, families and communities with science.  With the support of this fund then one student at a time, one family at a time, one community at a time we will build support for, and trust in, biomedical research.

Thank you for Speaking Up For Research.

Kind Regards

 

Ken Gordon – Executive Director

Northwest Association for Biomedical Research

(P) 206-957-3337 (C) 206-595-2450

 

 

Hope from tragedy

Thomas Gray lived six days, but his life has lasting impact

Sarah Gray, above, looks over some of the research information about the donated retinas from her late son, Thomas, as her son Callum looks on during a recent visit to the University of Pennsylvania’s Anatomy Chemistry Building in Philadelphia. (David Maialetti/TNS)

There was a compelling story in April 5’s Seattle Times.  The story discusses Sarah Gray who gave birth to twins, knowing that one of those twins, Thomas, was not going to survive.  Thomas died at six days.

To try and pull some goodness out of this tragedy Sarah donated his eyes, his liver along with umbilical-cord blood for medical research purposes.

What made this story compelling is that Sarah followed up with the research institutions to find out what had occurred because of the donations.  She travelled to and met directly with researcher’s that had had access to Thomas’ tissue, was able to see the research reports and other findings directly attributable to that tissue, and was able to also see the growing list of citations for the next level of research projects that in essence were extensions to that original work with Thomas’ tissue.

James Zieske the senior scientist at an Eye Institute at Harvard Medical School told Sarah:

“Your visit helped to remind me that all the eyes we receive are an incredibly generous gift from someone who loved and cared about the person who provided the eyes. I thank you for reminding me of this.”

James also told Sarah that Thomas’ cornea was used in a study that might one day cure corneal blindness.

This article again reminded me of the breadth of work occurring in the biomedical research field, the breakthroughs that are happening every day – and the total reliance of science on both the generosity and support of the public for this work.

We are all beholding, to Thomas and his family for the gift that they made.  As we are also beholding to the millions of individuals who through these most intimate and sacred donations have contributed to the knowledge that we all now totally rely on.

Thank you

Ken Gordon

Executive Director

NWABR

A Learning Adventure! Mock IACUC Protocol Session –Guest Blogger Andrea S.

Attendees of the recent 2015 IACUC Conference participated in practice sessions designed to facilitate some hard choices.  Teams reviewed a “protocol” (a proposal for research).  Not only were participants asked to question whether the behavior of these “mock” proposals complied with the laws governing humane treatment of animals, but they were asked to consider the ethical questions of whether the proposal could pass to actionable as both compassionate and thorough.

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Ok, it’s a mouthful, but this year’s highlight was going over the Veterinarian Verification and Consult (VVC) process of minor vs. major protocol changes. This catchy new acronym was the talk of the conference and explained in detail during the event.  Simply, it’s like this:  If a scientist submits a proposed way of working with animals, and then and has a small change to add, does research that could benefit humans have to delay because of it?  Sometimes yes, sometimes no.  It depends on the scope of change.

An Institutional Care and Use Committee (IACUC) is unique to any organization that works with animals, and consists of at least one veterinarian who has training in laboratory animal science and expertise in the species under review and consideration, at least one practicing research scientist, at least one member whose primary concerns are in a nonscientific area (i.e., ethicist, lawyer, member of the clergy), and at least one person not affiliated with the institution to represent community interests in proper care and use of animals.

On Monday, February 23, 2015 our color-coded badges distinguished each attendee with a committee role. Despite the afternoon break sugar rush from the malted milk balls, MC James Riddle was able to quickly transition participants into forming mock IACUCs at each of the tables. Next, we sought to solve tricky VVC –related protocol scenarios.

It was easily the cherry on top of the sundae, aside from the sunny skies viewable through the large bay windows, but pairing with strangers served as a great networking opportunity for our regulatory community.  Allowing time to exchange expertise across multiple fields and backgrounds was invaluable. We could step Out of the Mouse Cage a bit, to see what perspective someone from a different institution might have.

Mock protocol review sessions during a conference, what a great idea!

Guest blogger Andrea S. attended last week’s Conference Beyond the Mouse Cage: Human Health in Motion at Bell Harbor. She currently supports IACUC work at Western Washington University.

 

Better Them Than Me? –Guest Blogger Saradha S.

NWABR features of series of volunteer guest bloggers over the next months who will be documenting programs, speakers and events. We thank each contributor for their time, talent and opinions.

______________________________________

As a compassionate member of the public, my first professional foray into the much talked about field of bioethics happens next week.  I’m looking forward to a transition from coffee shop talk to finding out what really happens behind the scenes in biomedical research.

I come, as we all do, with questions. Is the scientific community really as unconcerned about bioethics as we make them out to be, or is there something that the public is missing here? While news pieces like this recent one get me thinking about the downside of using animals for research, it also makes me question all the big and small advantages I’ve (or anyone I care about) had from such research on animals, and it leads me to consider a conflict among the research fraternity about the best way to conduct animal research. How does such conflict get resolved? I want the real story.

It’s these and many such musings that drew me to NWABR and the 2015 IACUC conference organized in Seattle this February. I realized there was a lot more I needed to know about ethical research. I’m hoping that the IACUC conference will provide me an opportunity to learn more about how and why we consider our fellow living beings (animals) and how we are responsible to save, protect and treat them and beyond them, how we protect ourselves from disease and suffering. With luck this valuable forum enables our scientific community to interact among themselves and share their best practices to make sure animals are used in the most humane, painless and responsible manner. 

So I’m looking forward to catch a glimpse of the deliberation and debate around research animals and the role of the Institutional Animal Care and Use Committees gathered here!

Saradha is a Business development professional with international experience in marketing, inside sales and market research.  She brings her MS in Biotechnology with post-graduate studies in business development and several biotech industry internships to bear as a volunteer in the life sciences

Bridging the Gap at UW: A Post-Conference Networking Event and Zebrafish Facility Tour

zebra fish

Zebra Fish

It’s a fun, limited space event for members and attendees. 

It’s all happening on Tuesday February 24th following the 2015 IACUC Conference.  NWABR in partnership with the University of Washington Office of Animal Welfare sponsors the 1st Annual behind-the-scenes look at various components of UW animal care and use program and a guided tour/mock IACUC inspection of one of their state-of-the-art zebrafish facilities. 

You wanted low-key and casual – and here it is, a networking event bringing together IACUC administrators/staff, researchers, educators, leaders, government officials and others who play a role in conducting outstanding service to the research community. It’s a bit of training and touring, a bit of lunch, and an interactive mock-iacuc review.

We’ll exchange ideas that are instrumental in creating a culture of compliance. Our goal is to strengthen IACUC administrative relationships throughout the region, and learn from each other.

If you have an interest in attending, email to Janine at conferences@nwabr.org.

Bring ideas and a notebook. We are stronger when we share ideas, best practices and passion.  We’ll see you there. 

Janine Kennedy

Conference Lead

Northwest Association for Biomedical Research

Brown Fat to the Rescue

Insulin_leptin convert white to brown fatAs many of you might remember from your animal development lessons, mammals are born with brown fat, a type of fat that stores energy and releases that energy as heat–which is very handy in creating body heat for critters that cannot generate heat by shivering.  So cool (or hot, as the case may be)!  As mammals get older, brown fat is greatly reduced unless they are hibernating mammals. Mammals are then sidled with white fat, which many of us have come to know as love handles and muffin tops and in most cases just adds to our growing overweight and obesity epidemic.

Published today in The Scientist and in Cell, researchers Dodd et.al. in Australia have demonstrated a strong, if not causative relationship, between the conversion of white fat to brown fat through the hormones leptin and insulin.  These hormones have long been associated with metabolism, hunger and satiety and weight, but until now were not understood in this mechanism. Here is how it works: appetite suppressing neurons in the hypothalamus receive information from blood-borne leptin and insulin, telling the rest of the body, including fat tissue, that “we’re satisfied.”  In the lab, mouse models were designed such that genes were disabled for two phosphatase enzymes that dim the responsiveness of these hypothalamic neurons to leptin and insulin.  These mice converted white to brown fat and did not gain weight when fed a high-fat diet, unlike mice without the double gene knockout.

It will be interesting to study this mechanism in people, though we can’t use the same study design–genetic engineering isn’t possible in this way with humans.  That being said, I just might sign up for a Phase II trial on this work.  I’d be very enthusiastic about having more brown fat and less white fat!

Best regards and happy browning,

Jen Wroblewski

A new way to test efficacy of drugs

Good morning

An article on NPR this morning discusses how the use of a bed of radiated mouse cells helped human cancer cells thrive in the lab.  Dr. Richard Schlegel was having trouble running in vitro (test tube) tests on human cancer cells, as the cells would quickly degrade and die in the lab.  Placing the human cells on a bed of irradiated mouse cells and with a compound that regulates cell growth has allowed these human cells to thrive.

With thriving cancer cells in the lab, Dr. Schlegel and his team at Georgetown University Medical Center have then be able to much more easily test other drugs that can slow down or stop the growth of cancer cells.  A surprise finding already is that a drug used to treat malaria (a form of artemisinin) appears to be an effective in killing cervical cancer cells.

This finding, in turn, has allowed the commencement of a human drug trial targeting women with precancerous cervical cells.

This technique that allows for thriving test cells in the lab, whilst still very early in its development, could dramatically speed up the process of taking promising drugs out of the lab and allowing for their effective use in both human and animals.

Regards

Ken Gordon

Executive Director

Big Data Not a Cure-All in Medicine

Happy New Year

Here at NWABR we hope that you all had a healthy and fund start to the new year.  I had two people I know admitted to hospital over the season – both with fairly inexplicable signs and symptoms – both are now out and feeling better and it was still scary for all concerned.

An article on NPR yesterday Big Data Not A Cure-All discussed a case when a physician at Lucile Packard Children’s Hospital felt like she had seen a number of emergency pediatric lupus cases where blood clotting had become a serious issue.  A child presented with lupus and she called the team together to consider administration of an anti-coagulant to prevent the chance of a blood clot.  In the absence of actual medical research on lupus and clotting and because anti-coagulants are not risk free the team decided to do nothing.

The physician in this case then ran a query on their electronic record database and found that a high proportion of lupus patients had experienced blood clotting.  With this new information the team administered the anti-coagulant and the patient avoided this complication.

The ability to access electronic medical records is a potential treasure trove for medical researchers.  The data is there, large numbers can be examined at low cost and the potential for knowledge generation is significant.

The article also raises concerns about basing treatments based on historical data.  The potential for data errors and spurious correlations needs to be addressed.  This is also a form of medical research and there needs to be protections put in place to respect patients rights.  Most patients have not explicitly consented to allow their data to be used for such after the fact research.  Protocols obviously need to be addressed that ensure confidentiality and appropriate use of this data, and to also ensure that treatment protocols leveraged from such data are also safe.

All of that said, the ability to make use of this treasure trove is exciting and definitely brings with it the potential to increase the impact of medical research.

Take care out there.

Regards

Ken Gordon

Executive Director

The overhyping of medical research

Dear all

Michael Louella from the University of Washington shared this cautionary article about the overhyping of medical research findings.  The exaggeration that creeps into reporting of medical research falls into three categories:

  1. advice (say, to stop eating eggs or to drink more coffee) that was not indicated by the scientific study,
  2. stronger claims than indicated in the article (for example, saying that stress causes hemorrhoids when a study might show only that stress was associated with hemorrhoids) and
  3. directly relating findings to humans, when in fact the study was performed in rats, mice or cells.

There is a lot of finger pointing associated with these errors.  Some of the fault lies on our research side of the information war.  Researchers and their media helpers summarize their findings in press (media releases) and it is often these releases that are the essential first shot in the information war.  A study published December 9 in the British Medical Journal from Petroc Sumner of Cardiff University in Wales showed that:

  1. 40 % of press releases contained explicit advice not indicated in the journal article.
  2. Another 33% of claims in press releases used stronger language than in the journal article.
  3. Finally, 36% of press releases inferred that a finding was related to human health when the study was not actually performed in humans.

Furthermore the resulting news articles arising from these releases showed that:

  1. When advice was indicated in the press release, 58% of news stories also gave advice.
  2. News stories exaggerated associations 81% of the time if claims were also exaggerated in the press release.
  3. And when press releases improperly extrapolated animal findings to humans, the news extrapolated too — 86% of the time.

At NWABR we try hard to help researchers get the message out about their work.  Sometimes we have advised researchers to reduce nuance to help clarity.  This new research shows that we have to be very careful with this advice as it can lead to inflated claims, misunderstanding and incorrect information – all things that actually will serve to reduce the public’s trust in this most important work.

Heavy thoughts for the season – I hope everyone has a great holiday season and here at NWABR we are excited for the new year.

Regards

Ken Gordon

Executive Director

Is it safe to study deadly viruses?

Good morning

There was a great story on NPR this morning from the wonderfully named Nell Greenfieldboyce.  The story discusses the work of Ralph Baric, who has been studying the MERS virus (Middle East Respiratory Syndrome virus).  A decision from the Whitehouse has stopped all work on MERS, SARS and influenza.  The moratorium was put in place because of a concern that in studying the viruses there was a chance that researchers could actually make the virus more dangerous.

Baric’s work was aimed at doing the exact opposite of making the virus more dangerous.  He was aiming to infect mice with the virus to test the efficacy of different vaccines and other options for stopping the spread and impact of this virus.  MERS is a potential pandemic virus as it is spread by air.  Knowing how to stop its spread is a pretty important thing.

Virologist Ralph Baric in one of his labs at University of North Carolina Chapel Hill.

Ralph Baric

The administration’s moratorium on this research was put in place to ensure that this research is safe, you can’t help but feel that the world is a little more dangerous though when the leading researcher on this virus is no longer allowed to work to find ways to mitigate its impacts.

Have a safe day!

Ken Gordon

Executive Director

 

Our Bioteh Future

Good morning all

In all of the election coverage over the last few days you may have missed this guest editorial in the Seattle Times from H. Stewart Parker.  Ms. Parker in this Op. Ed. charts the development of a number of key biotech firms and products here in the Northwest and talks about the diaspora of staff from Immunex the company that invented Enbrel, a breakthrough drug for the treatment of rheumatoid arthritis.

H. STEWART PARKER, MBA

H. Stewart Parker, MBA

Biomedical research and biotechnology combine to provide 34,200 direct jobs in WA state and a total of 92,400 total jobs once you count all of the ancillary support people (like me).  In total this sector makes up $11.4 Billion of the state’s GDP and provides $7.1 Billion in personal income.

Unfortunately even though this sector makes up the 5th largest sector in the state, with life science organizations in 74 cities – it often feels like the sector flies under the radar screen with people seeing the major economic drivers in WA and the NW as being IT and aeronautics.  Ms. Parker’s Op. Ed. reminds us all of the contribution of the sector – both in terms of economics and also in terms of the life saving changes being brought to us on a daily basis.

Talking about life saving changes – I had the pleasure of attending a fund raising luncheon hosted by the Benaroya Research Institute this last Friday.  They have a very simple mission – they want to cure 80 plus autoimmune diseases, like Type 1 diabetes, Crohn’s Disease and MS.  In one word BRI’s work is – inspiring.  Their new brand of “BRIng it on” is both fun and a challenge to us all to do better.

Have a great day.

Ken Gordon

Executive Director

 

Coffee!!!

Good afternoon coffee lovers

Coffee Mad Scientist

An article in today’s Seattle Times, cites research from one of NWABR’s members – the Fred Hutchinson Cancer Research Center – or as they are often known the “Fred Hutch”.

Apparently, the Hutch has proven a link between coffee intake and DNA. As a person who has some DNA floating around in my coffee circulatory system I definitely think that this must be the case. Coffee does not make me buzz, coffee does not keep me awake and I think my bladder would burst before my caffeine levels ever reached dangerously high levels.

Its good to know that my DNA has allowed the healthy consumption of such unhealthy quantities of this magic elixir.

Real cause to Thank Research.

Regards

Ken Gordon

Executive Director

Half of US adults 40 to 75 eligible for statins

A report in today’s Seattle Times suggests that cholesterol lowering statins will be in most of your futures.  Based on research from Duke University (which surveyed 4,000 people) it is now estimated that half of US adults between the ages of 40 to 75, and nearly all men over the age of 70 meet recently changed criteria for the use of statins. 

The guidelines for the use of statins were devised by the American Heart Association and the American College of Cardiology.  The Duke study estimates that half a million strokes and heart attacks over a ten year period could be prevented if the new guidelines were followed. 

There is some criticism of the new guidelines which favor the use of statins over other lifestyle changes (such as not smoking or working to reduce stress).

Ken Gordon

Executive Director

Community Conversation – 23andMe – What Can Your Genes Tell You

Last evening (Tuesday March 18, 2014) the Northwest Association for Biomedical Research (NWABR) hosted a Community Conversation that explored the issues around Direct-To-Consumer Genetic Testing.

These Community Conversations are a partnership between NWABR and the Institute for Translational Health Sciences at the University of Washington.  The purpose of these Community Conversations is to enable members of the public to become engaged with emerging issues in the bioscience realm.  Our hope is that an engaged public will be better placed to think through complex scientific and ethical issues, make informed contributions, build relations with experts in the field – and most importantly – provide those same experts with feedback from a community perspective on these issues.

At the Community Conversation hosted yesterday evening around 35 people gathered to discuss direct-to-consumer genetic testing services.  The company 23andMe has been providing this service to customers and approximately 650,000 people have both had their DNA tested and agreed to share their records to help build a DNA database that will, hopefully, in the future improve the accuracy of the findings that 23andMe can report to their customers.

The FDA has asked 23andMe to stop marketing the health benefits of this testing service and to no longer provide direct findings to customers about any health implications arising from the genetic tests that they perform.  The FDA is concerned that a consumer may misinterpret the results that they receive from 23andMe and subsequently make poorly informed health care decisions.

Yesterday’s Community Conversation was held at Kakao Chocolate + Coffee in Westlake.  The Conversation was facilitated by Sarah Nelson and Lorelei Walker, who are MPH and PhD candidates in Public Health Genetics at the University of Washington.  Following the presentations from Ms. Nelson and Ms. Walker the participants had a wide ranging discussion that touched on: privacy, trust, potential commercializing of DNA, the need for access to this information. the need for help in interpreting the information, resistance from some members of the medical community, the current lack of diversity in the 23andMe database, support for and frustration with the FDA and much more.

As we the staff at NWABR watched the conversation progress we were amazed that such a great group had come out on a Tuesday evening, given up their own time, and dived so eagerly into this complex area.  We were again reminded of just how rich discussions can be when these two sometimes diverse worlds come together.

Regards

Ken Gordon

Executive Director

Northwest Association for Biomedical Research

Registration Opens for NWABR’s Camp BIOmed, a new summer camp for high school students

Students entering 9th-12th grade can now sign-up for three of the four exciting summer camp sessions organized by Northwest Association for Biomedical Research (NWABR).  Each of the four camp tracks for Camp BIOmed are a week long and will be repeated for seven weeks, starting July 7 through August 23.

Students and parents can register and find additional information about the programs at www.nwabr.org/campbiomed.

The four summer camp programs focus on various topics relating to biomedical research and its ethical conduct, which include:

Bioethics thru Gaming
Protein Foldit! Be a Citizen Scientist
Hive Bio (Do it Yourself) Lab with Neuroscience
Lab Intensive Experience

Throughout the summer camps, students will take part in hands-on experiments at local biomedical businesses and research facilities, track their own findings as part of these experiments in lab journals, and tour local Seattle biomedical organizations. Each week of the summer camp will conclude with a culminating expo where campers will share all group and individual projects and contributions.

Early bird registration is open now for members for $450-$525 depending on track.  Non-members can begin registering on January 29 by signing up as a member ($25, plus the camp fee).  The price for camp for all will increase after March 31 by $90 for all tracks.  Financial assistance for partial camperships are available for students to attend the program.  The financial assistance application is available in the camp registration at http://www.nwabr.org/campbiomed

To register for Camp BIOmed check out www.nwabr.org/campbiomed

For more information, contact camp@nwabr.org

About NWABR

NWABRs mission is to promote the understanding of biomedical research and its ethical conduct. NWABR is dedicated to strengthening public trust in biomedical research, through education and dialogue. Through our diverse membership of academic organizations, biotech industry, non-profit research institutes, health care, and voluntary health organizations, along with extensive education programs, we foster a shared commitment to the ethical conduct of research and ensure the vitality of the life sciences community.

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.

Student Research Fellows East Day 8!

From heath care policy to commercialization to P4 medicine–it was a full day!

Some student quotes:

“I didn’t know how hard it is to start your own business, or patent your inventions. It costs a lot. It was really nice to know that we have foundations to help people get started.”

“If you push yourself to find out, you can find a whole realm of possibilities through the science field.”

“I really enjoyed having Dr. Oliver come talk to us about P4 medicine, and “the cloud” which you can have your medical information looked at by others doctors that you go see.”

View more information on the Summer Student Research Fellows program at NWABR.

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.

Collaborations to Understand Research and Ethics, a Science Education Partnership Award from the National Center for Research Resources at the National Institutes of Health

Northwest Association for Biomedical Research -- logo

Student Research Fellows East Day 7!

Today we were hosted by the Certified Registered Nurse Anesthetist program at Sacred Heart Hospital, then toured PAML, a diagnostics lab.

Some student quotes:

“Today we learned about how there is a lot to learn when putting someone to sleep for surgery. You have to measure your oxygen levels and blood pressure. It was very interesting especially when we made students’ muscles twitch without them doing it.”

“Today I learned how scientists test for STDs and that machines now do most of the testing.”

“There is more to nursing than meets the eye!”

 

View more information on the Summer Student Research Fellows program at NWABR.

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.

Collaborations to Understand Research and Ethics, a Science Education Partnership Award from the National Center for Research Resources at the National Institutes of Health

Northwest Association for Biomedical Research -- logo