Speak Up For Research Education Fund

How did science hook you?

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

 

 

People Not Paperwork: Perspectives from the 2015 Institutional Review Board Conference

On July 23^rd in Seattle, WA co-presented by NWABR and Quorum Review IRB, the Revolutionizing Informed Consent Conference brought together scientists, researchers, ethicists and community members to discuss a way to create a better experience for participants in human clinical trials. The “consent document” is a confirmation of the consent process that explains the nature of the research and any risks and benefits to a participant to communication required throughout, but informed consent is an ongoing process. It starts before any forms are signed, and it continues through the completion of the subject’s involvement in the study. A copy of the consent document is reviewed by the IRB before it is presented to prospective participants.

With her daughter, Marie-Térèse Little, PhD, WIRB scholarship recipient.

Guest blogger and biomed community member Marie-Térèse highlights some of the presentations that were fascinating and thought provoking. We appreciate her contribution, each of the participants attending, our speakers, planning committee, our sponsor partners WIRB, CITI and Fred Hutch, and Boston University for supporting the important work of creating dialog among experts to discuss practical advocacy and compassion for human subjects.

People Not Paperwork

It is clear from the thought-provoking presentations from speakers across North America offered at this year’s conference of Revolutionizing Informed Consent that innovation and technology are indeed starting to revolutionize the informed consent process. These seminars challenged the status quo and how we contemplate this important process in the context of clinical research. Mr. Zachary Hallinan, Director of Patient Communication and Engagement Programs at the Center for Information and Study on Clinical Research Participation, presented Barriers to Change in the Informed Consent Process – a Systematic Review, addressing the barriers to improving consent, general environmental factors affecting patient satisfaction in the informed consent process, instruments for measuring consent and how the current informed consent model impact enrollment in clinical trials.

Mr. Hallinan’s findings concerning the many environmental factors within the consent process affecting patient satisfaction include: limited time to deliberate, feeling overwhelmed by the initial diagnosis, being asked to produce a written consent (for patients with life-threating diagnoses), feeling responsible for their own treatment decision, the physician’s medical language and the structure of the consultation, not enough detail and conversely, and too much detail. It is interesting that some patients simply do not want to be responsible for their decision to enroll in a trial.

Satisfaction appears to result from the actual discussion rather than the document itself. Surprisingly, there is no real evidence to suggest that the informed consent document increases or decreases enrollment; however, there was a positive correlation between the informed consent discussion and enrollment rates. This research is valuable and practical because it reminds us in the research ethics community the value of the entire consent process complete with an open, dynamic discussion, not just a document or a signature. Hallinan’s important presentation was both in-depth and stimulating and culminated with a plea to re-focus on the primary goal of educating and informing participants about the trials so that the decisions they make are truly informed. From his comprehensive research, Hallinan recommends that IRB (and REB) policies and procedures be revised to facilitate collaboration between ethics review communities.

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 speaker sessions featured this month.

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

Students entering 9^th-12^th 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.

Student Research Fellows, 2012

What a week with NWABR! Our twelve Student Research Fellows visited  Amgen, the University of Washington’s Institute for Stem Cell and Regenerative Medicine, Fred Hutchinson Cancer Research Center and the University of Washington Clinical Research Center. Thank you to our hosts for providing us with engaging speakers, tours of your labs and lots of new ideas!

Some student quotes:

“I learned so much about the immune system as well as flow cytometry. It was an eye-opening experience. Because of today, I have included another possible direction to my list of future careers.”  -Chris

“I learned all about stem cells, how research is done, how stem cells are harvested and why they are so important to life and the future.” -Bethany

“When I am older, I want to do something involving genetic disease. I think this is promising.” -Emma

Biology in the Age of Computing

Biology in the Age of Computing: Online Resources for Teachers and Students

As part of NWABR’s ongoing commitment to inspiring students in science, we are excited to announce an upcoming webinar featuring NWABR program staff and partner scientists. The webinar is geared towards teachers and students, as well as formal and informal educators and will be archived for future viewing. We hope to see you online!

Wednesday, February 8th from 11:00am to 12:00pm PST
If you’d like to register for the event, click here.

Join us as we share curricula, online resources, teacher experiences and research findings from Bio-ITEST: New Frontiers in Bioinformatics and Computational Biology, a program funded by the National Science Foundation that brings the exciting field of bioinformatics to high school teachers and students. Bioinformatics is the application of computer science and information technology to the field of biology and medicine. With a strong emphasis on increasing student awareness of STEM careers, each Bio-ITEST lesson features an individual who uses bioinformatics in their work, or whose work is made possible by bioinformatics. The presentation will include an overview of curricular units, including introductory lessons on genetic testing and advanced lessons on genetic research, as well as an exploration of the online resources. Presenters will share lessons learned about increasing student STEM career awareness and engagement in the context of the Bio-ITEST project.

Biology in the Age of Computing: Online Resources for High School Teachers and Students is presented in partnership with the National Girls Collaborative Project and EdLab Group.

The National Girls Collaborative Project is partially funded by a grant from the National Science Foundation, GSE/EXT: National Girls Collaborative Project: Building the Capacity of STEM Practitioners to Develop a Diverse Workforce, Grant No.HRD-1103073. The Bio-ITEST program is made possible by an Innovative Technology Experiences for Students and Teachers grant award from the National Science Foundation, DRL-0833779.