Direct to Consumer (DTC) genetic tests are DNA tests ordered by the consumer without a doctor’s order or medical counselor to help interpret the results.  The public can learn about their genetic ancestry and genetic health risks, but is it harmful to order and receive this kind of information without the guidance of a medical counselor? During this discussion, we will explore facts to consider when ordering a DTC genetic test and the role of the medical community to aid and protect consumers in this emerging technology.

click here to register

When:   February 21, 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!

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.

WHAT:                           IACUC Regional Education Conference
WHEN:                          Friday – Feb. 24th – 7:00 am-4:30 pm
WHERE:                        Seattle
REGISTRATION:          Online link at http://www.nwabr.org/members/iacuc

Timely topics and engaging speakers make this one day conference a valuable training and networking event for new and experienced IACUC members and researchers.  View highlights and agenda at http://www.nwabr.org/members/iacuc.

The keynote speaker:  Dr. Alicia Karas, Tufts University
-  Assessing pain and the IACUCs role in evaluating protocols

Other program highlights include:
-  Update on compliance with the Guide – Dr. Helen Diggs, Oregon State Univ. , AAALAC Internat’l Counselor
-  Motivation to speak up for research – Dr. Cindy Buckmaster, Baylor College of Medicine
-  Training for new IACUC members and review for experienced members
-  Updates and Q&A with representatives from USDA and AAALAC International

This conference combines regional convenience with national caliber training. Encourage your institution to send a team!
Registration Fees: 
$285.00      NWABR member
$235.00      NWABR member, Group (10 or more)
$415.00      Non-NWABR member

We wish to thank our sponsors to date:  Purina LabDiet, Rees Scientific, Huron Education|Click.

For more information and sponsorship opportunities, contact Reitha Weeks at rweeks@nwabr.org.

If you are a researcher and would like to judge these wonderful essays, sign up at http://nwabr.org/nwabr.org/community/volunteer-opportunities/essay-judge-registration.

Students will strengthen their writing, research and interviewing skills while discovering the role of scientists in biomedical research and the relevance of biomedical research to themselves, their family or their pets.  They may choose topics that allow them to investigate the development of medications that they are taking, the medical device implants received by relatives or the shots given to their pets.  They must include evidence of how the use of animals or humans in clinical trials have advanced research and medical treatments.

Every student will receive comments about their essay from the researchers serving as judges.  Judges receive scoring criteria and will participate in one or two rounds of judging between March 14 and April 2.  The process takes place electronically – essays are sent by email and scoring is done online – so there is no geographic limit to who can be a judge.

Winning students in the general category and English Language Learner category will receive a cash prize and be invited to an Awards Day at a research facility.  Teachers and parents of winning students are also invited to the Awards Day to meet scientists and engage in tours and hands-on activities.

Contest Timeline:
Jan. 10        “Intent to participate” registration encouraged
March 9      Essay submission date
April 13       Winners announced
May             Awards Day event

For more information, visit NWABR’s website, http://nwabr.org/students/essay-contest, or contact Reitha Weeks at rweeks@nwabr.org or 206-957-3337 x305.

Register now!

Tuesday, January 31st, 2012
4:30 to 5:30 p.m.- Annual Members’ Meeting
5:30 to 6:30 p.m.- Reception
Seattle BioMed- Discovery Room
307 Westlake Avenue North, Suite 500

As a NWABR member and supporter, you will be the first to see and hear highlights from our 2011 Annual Report and to meet the newest members of NWABR’s Board of Directors:

• William Dale, Ph.D., Research Integrity Officer, Oregon Health and Science University
• Anson Fatland, Ph.D., Associate Vice President of Economic Development and External Affairs, Washington State University
• Dana Riley Black, M.Ed., Ph.D., Center for Inquiry Science Director, Institute for Systems Biology
• Lee Schoentrup, Director of Communications, Seattle BioMed

We extend a standing ovation to everyone who helped shape the success of our programs this past year! Don’t miss this opportunity to meet NWABR Board Members and connect with researchers, clinicians, veterinarians, bioethicists and patients  involved in our education outreach programs.

Food and drinks will be provided.

We ask that you bring along a bottle of your favorite moderately priced wine as an in-kind donation to be used at our Annual Fundraiser set for June 12, 2012 at 415 Westlake.

Please RSVP at http://nwabr.org/about-nwabr/about-nwabr/holiday

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!

Students have the opportunity to explore the process of biomedical research and its relevance to themselves, their family or their pets.  They may choose topics that allow them to investigate the development of medications that they are taking, the medical device implants received by relatives, or the shots given to their pets.  They must include evidence of how the use of animals or humans in clinical trials have advanced research and medical treatments.

Students will strengthen their writing, research and interviewing skills while discovering the role of scientists in biomedical research that really does impact their lives.  In addition to the essay, students must include a reflective paragraph about what they have learned.

Every student will receive comments about their essay from the researchers serving as judges.  Winning students in the general category and English as a Second Language category will receive a cash prize and be invited to an Awards Day at a research facility.  Teachers and parents of winning students are also invited to the Awards Day to meet scientists and engage in tours and hands-on activities.

Contest Timeline:

December 9, 2011     Register intent to participate with NWABR
March 9, 2012            Submit essays
April 13, 2012             Winners announced
May 2012                     Awards Day events

NWABR can provide resources and speakers from our Speakers Bureau to engage the students in the project.
For more information, visit NWABR’s website, http://nwabr.org/students/essay-contest, or contact Reitha Weeks at rweeks@nwbr.org or 206-957-3337 x305.

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.

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.

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!

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.

Thursday, October 13th, 2011
Rainier Square Atrium | 1333 Fifth Avenue, Seattle
 
Brown Bag Lunch: $20/CityClub Members | $25/Guests and co-presenters | $30/General public
Coffee & Dessert: $12/CityClub Members | $15/Guests and co-presenters | $18/General public
Visit http://www.SeattleCityClub.org to register or call 206-682-7395

Know your numbers for a healthier you! Sign up for a free 15min health screening at 206-604-8762

Schedule:
Health Assessment Screening and Information Fair 9-11:30am
Luncheon Registration 11:30am-noon
Brown Bag Lunch and Program Noon-1:30pm

When asked about numbers in health, most people would respond with their weight. Others might respond by talking about the ever increasing cost of healthcare. But what’s the connection between the two? How can knowing your Body Mass Index, blood pressure, blood glucose and more teach you about your current health and how you can improve it? Would becoming a proactive participant in your health impact the bottom line in healthcare costs for you and the nation? Make a free appointment for a 15 minute health assessment to learn your numbers and then join us for discussion over lunch in the afternoon. Bring your opinions and questions for an interactive discussion on how numbers in health impact you and government policies.

Featuring:

Paula Lozano, MD, MPH, Assistant Medical Director, Group Health Department of Preventive Care

Oscar Lucas, VP & GM Health Care Informatics, Premera Blue Cross

Greg Vigdor, President & CEO, Washington Health Foundation

Moderator: Andrew Shorr; Author, The Web-Savvy Patient and Host, PatientPower.info

Thanks to our: 

Health Care Series Presenting Sponsor- UW Medicine
Forum Sponsors- Group Health and Swedish
Contributing Sponsor- Bastyr University Center for Health Policy and Leadership

Co-presenting organizations- Alzheimer’s Association, Northwest Association for Biomedical Research, Public Health – Seattle King County, Puget Sound Health Alliance, Washington Health Foundation, and Washington State Hospital Association. 

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.

– Jeanne Ting Chowning, NWABR Director of Education

Human Clinical Trials–the good, the bad, and what it takes to conduct your own.

Some student quotes:

“Today we learned that there are 3 phases to a clinical trial for humans, starting at Phase I with twenty people to Phase III with thousands of people.”

“I learned about how difficult is can be to get into human trials. Consenting is a huge part, that has been abused over the years.”

After determining if we were doing Human Subjects Research with an IRB checklist, we looked at a consent form to participate in a lung capacity study.

“Did you know you can actually measure your lung capacity? How cool is that?”

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.

Some student quotes:

“I learned so much more about sickle-cell anemia. We also dressed as sophisticated researchers with our spiffy lab coats.”

“I learned about genetic testing. It can be used to determine which diseases you are most susceptible to.”

“We got to work with a sheep’s heart, and I gained a new respect for heart surgeons (some of the blood vessels are TINY!).”

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.

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.

Today we took a road trip to the College of Veterinary Medicine at Washington State University in Pullman.

Some student quotes:

“I learned how to prepare for surgery”

“I learned about all the different things a veterinarian does. I also learned about how much blood a horse’s heart pumps when it runs.”

“I learned that a horse’s maximum heart rate is 220-250 beats per minute. We actually got to see a horse on a treadmill.”

“We also learned about the WSU dairy farm and got to see new calves.

“Miguel was really cool.”

Thank you Mr. Inzunza and WSU!

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.

Dr. Marsh

STUDENT QUOTES OF THE DAY

“After hearing Dr. Marsh, Heidi, Will and Michele’s experiences with experimenting with rats and the close regulations around it, I felt better about using animals for research.”

“Research on mice is done with the best care and benefits both humans and animals.”

“We learned about animal roles  in research. I personally don’t really support it but it’s cool to see what they can do with the animals.”

3rs

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.

“Today we learned about what nurses had to go through to be certified. It was cool looking in at the simulation labs because it looked useful for the future when doing practices on real patients….though those mannequins were creepy.” –Candace

“I learned about absolute and relative ignorance. Like the fact that absolute ignorance is when no one knows the answer to a question [like in scientific research] and relative ignorance is when a person know an answer but other people do.” — Heather

Dr. Banasik's Blood Draw

Dr. Banasik showed us how patients get blood drawn for her study on addiction. We spun the blood in a centrifuge to see how it separates.

Kitty litter in the lab? Kendra finds out it is part of a spill kit. Absorbancy is good.

Kendra with Kitty Litter: For cats, or lab spills?

WSU School of Nursing, here we are!

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.

Micropipetting Machine

What a great group of students from the Spokane area–and what a day!

“We learned how to determine if a question is ethical. We also learned how to use an assortment of new tools–sequencing DNA.” – Kelsey

“We were future CSI trainees.” – Habeebah

CSI Spokane

Dr. Sylvia Oliver taught us how to use micropipettes and run gel electrophoresis boxes to find out if a horrendous crime was committed to cover up the kidnapping of a baby.

The DNA doesn’t lie!

Stained with Cyber Gold, visible under UV light

How much is a million?

Jason and Vlad Find One in a Million

The Big Find: See it? The little black bead right in the middle? That's it!

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.

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.

Check out the video and below that, photos of Woodinville HS at the Expo. We have many more Expo photos to share, so come back for more!

Congratulations to everyone who participated in the 2011 Student Bio Expo! Photographs by Mohini Patel Glanz.

The three-year NSF grant provides funding for education outreach programs that help secondary school teachers and their students learn about how information technology is used in biological research. Major collaborators include Digital World Biology, EdLab Group, and Shoreline Community College.

Teachers Said about Bio-ITEST at NWABR

“At the end of this course, I feel like I could create my own lesson if I needed to.”

“This was an excellent professional development opportunity!  It brought an emerging field of life science to my classroom that was not there before.  I look forward to using this material for many years to come!”

“I enjoyed learning how to use the technology tools Cn3D, Jalview, and FinchTV. The Socratic seminar was excellent also and I now have an effective way to teach students about STEM careers.”

“Having specific activities in the curriculum that asked them to use Cn3D was much better than a simple demonstration of the program. The students really liked using Cn3D … A lot of my kids also downloaded it at home. They’d come in early to school.”

“To be honest, I didn’t even know what bioinformatics was when I signed up for the class, yet was able to implement the curriculum and teach my students the material the first time I tried it.”

Professional Development in Systems Biology

The reunion was generously hosted by the Institute for Systems Biology (an NWABR member) in the South Lake Union neighborhood of Seattle, at the global headquarters they opened just this month, May 2011. Below photos of everyone at the reunion are a few photos of ISB’s new headquarters and neighborhood.

ISB also provided professional development for teachers with Education Program Coordinator Claudia Ludwig, using their systems biology module, Environmental Impacts on Gene Networks. All teachers who attended received the Environmental Impacts on Gene Networks kit to use in their classroom!

We began with a reception and discussion of teachers’ experiences with the Bio-ITEST program:

Then, Education Program Coordinator Claudia Ludwig presented ISB’s systems biology module, Environmental Impacts on Gene Networks:

and teachers received the Environmental Impacts on Gene Networks kit to use in their classroom!

The new ISB global headquarters are beautiful, of course. Here are a few snaps of  ISB and the neighborhood:

Brian Glanz from NWABR, reflected in a hallway at ISB.

Not ISB -- Across the street from ISB in the South Lake Union neighborhood of Seattle

ISB lab coats hang inside a window, and Seattle rain keeps outdoor table tennis interesting.

The Bio-ITEST program at NWABR is made possible by an Innovative Technology Experiences for Students and Teachers grant award from the National Science Foundation, DRL-0833779. 

Click here for more information and to register for the webinar.

This seminar will explore the science behind stem cells as well as ethical implications of embryonic stem cell research. Teachers will be provided with an overview of the popular resource on stem cell science and ethics geared towards secondary science classrooms, developed by NWABR.

The unit begins with a laboratory examination of planaria as a model organism for understanding stem cell biology. It provides engaging activities that highlight early embryonic development and compare and contrast different types of stem cells. Additional activities focus on the bioethical dimensions of stem cell research, including the variety of positions held by different stakeholders in the stem cell debate.

A Socratic Seminar allows students to discuss the role of public funding for stem cell research. The culminating assessment provides an opportunity for students to either prepare a letter to the President’s Bioethics Commission or propose a grant to fund research for a specific disease or disorder.

Click here to download a copy of the PowerPoint presentation for the webinar.

Jeanne Ting Chowning, MS is Director of Education at NWABR. The text of this blog post is based on the webinar description published at the page this link points to, by The NSTA Learning Center.

Our agenda in brief:
— 9:00-11:45 Student Presentations/Judging
— 12:30-1:00 Special Performances
— 1:00-2:00 Awards Ceremony

Clic here to download an Expo program or here to go to our Expo web site for directions and more or here to download our full press release for Student Bio Expo 2011.

Our Student Bio Expo provides the Seattle area with one of its few competitive high school science fairs. However, the Expo is not your usual science fair! It differs from regular fairs in two main ways. 1) Students develop projects with the assistance of a mentor scientist over the course of the school year. 2) Students can enter life-science themed projects in categories as diverse as art, music, drama, writing, and traditional scientific research. By applying their own talents to their projects, students are motivated to see the connection between science and their own lives and interests.

This year, we are excited to introduce a new Global Health collaboration with students in Kenya. The SEAVURIA (sea-vuh-REE-uh) project pairs students in the rural area of Vuria, Kenya with Seattle-area students and scientists. International teams of students collaborate on global health related research while being mentored by scientists from the Seattle Biomedical Research Institute, Fred Hutchinson Cancer Research Center, Seattle University, and the University of Washington. Students in Kenya present their findings at the Kenyan Science Congress, while Seattle students present at the Student Bio Expo.

Please read, share, and comment:

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.

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.

A patient’s story, especially if that patient is a scientist, can bring a sense of reality and poignancy to biomedical research. As a Ph.D. trained molecular biologist and program manager at the Northwest Association for Biomedical Research (NWABR), my story is in harmony with NWABR’s mission: to promote the understanding of biomedical research and its ethical conduct…When invited to speak at the first high school Junior Science Café of the academic year, I jumped at the chance. I titled my talk “Demystifying Breast Cancer: A Personal Tale,” hoping that I could encourage students to ask questions – to demystify something that has touched, and sometimes killed, so many… (Read More…)

(NIH grant UL1 RR025014 supports NWABR’s Speakers’ Bureau)

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.

Tagged: Cleveland High School, high school science café, Jeff Shaver, Project Lead the Way ]]> http://nwabr.wordpress.com/2011/02/18/high-school-science-cafes/feed/ 0 nwabr NWABR High School Science Cafes Collage http://nwabr.wordpress.com/2011/01/19/henrietta-lacks-ethics-at-the-intersection-of-health-care-and-biomedical-science/ http://nwabr.wordpress.com/2011/01/19/henrietta-lacks-ethics-at-the-intersection-of-health-care-and-biomedical-science/#comments Wed, 19 Jan 2011 20:55:22 +0000 NWABR http://nwabr.wordpress.com/?p=139 ]]>

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.

Click the graphic below to experience the animation:

Over 9,700 people visited Pacific Science Center during the three-day Life Science Research Weekend in November 2010. The Northwest Association for Biomedical Research and Pacific Science Center co-presented this 4th annual event that piqued the curiosity of visitors and brought science to life. More than 250 scientist volunteers provided hands-on activities for children and parents, showcasing innovative life sciences research  in our community. Local researchers and volunteers represented 27 organizations, companies, and academic departments, including: Amgen, Benaroya Research Institute, Swedish Medical Center, and groups from the University of Washington and Washington State University.

Thank you to all our scientist volunteers who made this incredible event happen!

The forum addressed issues of public trust and professional ethics in “biobanks” — large collections of biological samples and personal health information, also called “biorepositories.”

How should we govern biobanks? Can we trust them with our health information? How should donors provide consent? Will biobanks lead to medical progress?

These questions and others from the general public were addressed by our moderator, Gretchen Sorensen of Sorensen Ideas and three expert panelists:

• Kelly Edwards, PhD, Associate Professor, Department of Bioethics and Humanities at the University of Washington School of Medicine
• Shannon Sewards is Assistant Director for Operations, Human Subjects Division at the University of Washington
• Donna Russell, MHA is Director of Research Development and the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) at Seattle Children’s

Listen to or download recordings of the event (MP3): Part 1 | Part 2 or, see and read about the event below.

The most recent posts are listed at the top of this blog, so you might prefer to read up from the bottom:

• A guide to “Do You Know Where Your DNA Is?”
• Experts answer bioethics questions from the public
• How are biorepositories best governed?
• Science communications in the developing world
• Historical abuses and public trust
• Data collection and privacy
• The public as a full partner in science
• Will large biobanks lead to breakthroughs?
• Introducing our panelists
• From reactive to proactive health
• Do you know where your DNA is?

This blog was written by Brian Glanz for NWABR with photos by Jeffrey Luke for CityClub Seattle.

Duzan’s question, then is: As a potential solution to the white coat problem, has anyone considered using videos to establish understanding and consent in place of a one on one interaction?

Sewards notes that “We think of consent as an on-going process.” That is, they ensure participants have an on-going understanding and that forms stay updated.

Russell, for GAPPS describes that their study coordinators know the women across a long period of time, so there are a lot of questions back and forth.

For GAPPS donors then, there is a lot of time to think about consent.

Edwards adds there are new consent forms with more options, with which you can opt into or out of different parts of the research.

Still better, some of Edwards’ bioinformatics colleagues are working on a software interface with a question and answer experience on a computer. This is to lead you through the choices and help identify what you really want in terms of consent.

Next, writer Sally James from the Northwest Science Writers Association (@jamesian on Twitter) begins: “I find the definition of ‘informed’ to be really tricky right now. For those of us familiar with proteomics (the large-scale study of proteins, particularly their structures and functions) we can imagine: can anyone right now know the ramification of giving a DNA sample?

We are on the cusp of learning so much more information, and things are changing so quickly, James summarizes: “Can anyone know what we’re consenting to?”

Edwards replies: “This is exactly why I wonder whether we’ve out grown the usefulness of classic consent. I think we’ve outrun the term ‘informed consent’. We don’t know all the risks and benefits with respect to genetic information. We’ve had a number of conferences with experts in the room … and we still cannot anticipate all the risks.”

Edwards continues: “We should shift to consenting to a process … [such as] I agree to be a part of this bank, I understand there is a governing process, and if things change you will contact me again,” rather than committing to everything in the future at this one time.

Renee Delong, Regulatory Affairs Project Coordinator at Fred Hutchinson Cancer Research Center asked “What steps do you recommend to build public trust around biorepositories?”

Delong added, “I believe in the promise of biorepositories,” while mentioning a recent New York Times article about use of the Internet as a sort of repository for patients with rare genetic disorders. These patients openly share symptoms and diaries online which researchers can then, also access.

Edwards replied that communication and being transparent, having accountability, and having systems in place to know where the data are are all essential to building trust. She also stressed that biobank experts don’t yet know all the answers and they are open to suggestions.

Edwards agreed that people are absolutely owed some results back, but noted that not everyone wants to known their own personal results. Many people just want to know how the research is going in general. Individual results may not be conclusive or relevant, but scientists can give back more in terms of general results.

To another question from Delong, Russell replies that GAPPS participant-donors can change their minds up until that specimen has been sent out for research. Samples left behind or not yet used can be destroyed, and donors can be given confirmation that it’s been done.

Sewards adds: Every consent form has the phone number of the reviewing IRB, and they would love to hear from more people! – http://www.washington.edu/research/hsd/

Wendy, a member of CityClub and not a scientist says: “I would donate blood for science. What is the parade of horribles?” i.e. what are people’s objections to doing the same? She continues, “I don’t understand what all the issues are. If data are anonymous what are people worried about?”

Sewards outlines: “We are concerned if someone’s genetic information is out there without enough safeguards. Say an employer or someone else may find data related to health test results, like a test for HIV, and that data could come back to hurt you.”

Sewards particularly notes again that right now, DNA is seen as only identifiable with related and associated information, but what about five years from now?

Edwards adds: If you are a part of a clearly identifiable community such as by your ethnicity, there is also concern about research which could stigmatize your community. An example: whether a particular ethnicity is more inclined to commit crime. Perhaps you gave your blood to fight disease and it ends up being used in unintended ways, which are not personally, but socially disagreeable to you.

Ryan Luce, co-founder of Corengi asked whether there is a public health consideration which answers the privacy concerns of individuals.

Edwards replied that some patient groups, especially want more data shared and publicly. Open data and more open access to data and research might bypass even institutions themselves. Some want the data available to anyone who might use it and make a breakthrough.

Russell noted that many of the women in GAPPS have no problem with data sharing but that GAPPS still feels the responsibility of that trust being placed in them. “We don’t want people to ever feel bad about what they did.”

Sorensen, our moderator offers one closing question: “We have an enormous opportunity to move research forward and transform medicine but must ensure the public trust. If engaging the public is the way to do it, how can the people here today get more involved?”

Edwards answers: Continue conversations like this one, join book groups, bring all of this up during dinner with friends.

Raise these issues and get people thinking about them. This is not straightforward, so we need more people thinking about it and we need more and different ideas. Jen Wroblewski and NWABR can help put book groups or other conversations together and Edwards and her colleagues at UW would love to have more public conversations — so get in touch, http://www.nwabr.org/about/contact.html and http://depts.washington.edu/bhdept/facres/kfe_bio.html.

Russell points to The Immortal Life of Henrietta Lacks by Rebecca Skloot, which tackles some of the ethical issues involved. NWABR has prepared a discussion guide which can be used personally or by anyone wanting to facilitate discussions — download it in PDF format, here.

Russell also mentions a recent article in Newsweek, “The Prematurity Puzzle – Research on early births could hold clues to disorders like autism and cerebral palsy.” Her advice is to read and engage in all of this.

Sewards concludes: contact your local representatives if you have any concerns. The rights of research subjects are codified by the federal government and we want to make sure you are aware of your rights!

Read on below for the moderated panel discussion before public questions and answers, and see a guide to all posts on this blog, here. – Brian Glanz for NWABR

Sewards answers first, describing that there are federal regulations which it is their job to implement. “We look at ‘gatekeeping’ in IRB-speak. Who is the researcher approaching, what are they collecting, where is it being placed, what are the security measures? What is the purpose of the repository? Who will have access and how do you keep track?”

In other words, they look from the beginning to the end of the process. They especially have many regulations related to whether data are stored and released with due respect to privacy.

Edwards answers that “It depends on the purpose of the biobank.” They often advocate for dynamic governing because research and our understanding is changing a lot, and because we are just starting into these areas historically speaking.

Edwards continues: some old tools like consent forms may now be outdated. You can tell people up front a certain amount or number of things, but you may need to get back in touch later when the research changes or more researchers want to be involved or do different things with the data or specimens. We need new and more flexible strategies for communications and data management, including personal interactions of participants with their own data and with the research in general.

Russell notes: “We have two IRBs plus a utilization committee looking at scientific validity. We are looking at ways of harmonizing across sites and forming some standard operating procedures, but we are also talking about the bioethics of all of it.” They are actively addressing these questions and do not feel they have it all figured out, yet.

Sorensen asks Sewards: “Who is on these IRBs?” and her answer: UW faculty, people from the community, students, lawyers — the full gamut of who makes up our society — as required by federal regulation. Scientific expertise is important but so is the general public component.

Our moderator, Sorensen asks Russell to discuss more about what GAPPS has been doing in the developing world with regard to communication.

Russell: “We’re focusing on populations where these problems are the most acute, with high rates of preclampsia and pre-term birth and more.” Russell recalls meeting with women living in villages in Bangladesh and India. They had seen so many babies die in their villages that they really wanted to participate in research. They understood immediately that this would help not only in their lives but that it would help women everywhere in the world. They were very enthusiastic and wanted to contribute.

Sewards repeats out loud a question they consider often: Should one population bear the burden for all? They seek a middle ground in knowing that some populations need more protection than others.

Sewards mentions the Belmont Report and says that we also need to ensure research benefits all, not any one population. See also a less technical description of the Belmont Report.

Edwards answers: Public trust is huge, whether working with a historically disadvantaged or abused population or just the general question of public trust in institutions.

We don’t have health care for everyone in America. In places like Canada and England, there tends to be more enthusiasm in signing up for a population based study because people feel they benefit from the research. Public health and a more comprehensive system ensures greater protection for and benefits for participants.

That’s a problem in America both generally and especially in populations like African Americans who have suffered particularly infamous abuses like in the Tuskegee syphilis experiment. Some Native American tribes keep control of data, sharing with only the projects they are interested in.

Edwards closes by observing that there is a breakdown in communication, both with specific populations after research is completed and with the public in general. People aren’t getting the feedback they expect from scientists.

She asks everyone in the room — do you know that you have, or do you think that you have, your own specimens or data in a biobank? About half the room raises a hand, many tentatively. Edwards then explains there are many ways our tissues or data are collected that we may not be aware of, even being collected at birth.

There are two trends in biobank privacy. In one, greater anonymization has led to stripping more personal identifiers from samples and data.

Another trend is in the opposite direction, though: in some repositories, a tight link is being kept between personal identifiers and a person’s samples and other data. Advocacy-based biobanks tend toward this trend.

The reasons include that people can manage and access their own data and larger medical and/or research profiles. In some cases, people can track the use of their data in research.

This latter trend is more complicated, ethically and practically, but it may also lead to greater benefits in science and in public understanding.

Russell notes that GAPPS enrolls women at their first pre-natal visit, not knowing who may end up with a pre-term birth or other relevant circumstance. This is a very expensive operation, but even so they spend a lot of time in education and in verifying that strict rules have been followed to collect enough and valid data.

Sewards then describes the issues in greater detail — when do you ask for consent? What does the consent form look like? A concern of hers is adding greater context to consent.

Then, they will push the science and the scientists faster and more directly toward practical solutions. There are times a scientist may want to focus on understanding how every part of a process works, but the public may be more interested in working directly on the solution, especially in biomedicine.

Russell says generally that there needs to be more open dialogue and interaction between scientists and the public for the greater good. ”I think that’s the promise of biobanks” she says, noting simply that biobanks don’t exist without samples from the general public.

Sewards replies first: Having different varieties of specimens and data together is very powerful, as is having one place researchers can go to get data. Greater variability and generalizability are the wins.

Edwards adds: For a while it seemed like everybody was starting their own repository, whether governments or institutions. Scaling up has benefits but do we really need to scale up in this way, or are we doing it in the best way over all, is there too much redundancy?

Edwards continues: Operating biobanks at larger scales creates larger scale ethical questions as well. Quality suffers with samples and data from repositories, in some cases, and even ethics quality can suffer. In one significant case, the State of Texas was required to destroy 5 million samples in a biobank due to a parents’ group lawsuit. The details of the case aside, its result was a scientific loss for everyone involved.

The biggest breakthrough we’ve seen is in cancer research — such as determining which chemo will work for which person. A lot of the biobanks forming now are specific to a single disease, such as autism.

Kelly Edwards, PhD is Associate Professor, Department of Bioethics and Humanities at the University of Washington School of Medicine. Edwards is core faculty for the Institute for Public Health Genetics and the Critical Medical Humanities Research Cluster. For more, see her bio in the Department of Bioethics and Humanities.

Edwards describes the questions she helps others consider in her work as a bioethics consultant, often regarding biorepositories. Questions are sometimes  about recruitment and communications to potential recruits, such as “How should we handle consent?” Other questions surround data access, i.e. who has or should have access to data from the repository?

Shannon Sewards is Assistant Director for Operations, Human Subjects Division at the University of Washington. “What is ‘the human subjects division’ all about?” muses Sorensen, noting the intriguing name, before answering simply that it’s “anything that involves research on a person.” For further clarification we offer the following, from the division’s home page:

“Research involving human subjects must be reviewed and approved by an Institutional Review Board (IRB). At the UW, several IRB committees serve this function. The Human Subjects Division (HSD) provides administrative support and facilitates IRB review; assisting researchers throughout the process.”

Sewards describes that the role of IRBs is to be protective for the general public, while they can be a hindrance, relatively speaking for researchers.

Donna Russell, MHA is Director of Research Development and GAPPS at Seattle Children’s. GAPPS is the Global Alliance to Prevent Prematurity and Stillbirth, whose expanded mission includes maternal, newborn, and child health with a global scope.

Russell notes that GAPPS began because of the magnitude of the problem of pre-term birth, here in the U.S. and globally. 13 million pre-term births happen annually around the world, and 1 million of those are fatal. There are also 3 million still births.

That means there are more than ten times the number of still births as there are “SIDS” deaths. SIDS is relatively well publicized while still birth is not.

We still, fundamentally do not know what causes many of these deaths. The best strategy for solving the mystery is to link high quality specimens to descriptive data.

Therefore a cornerstone of GAPPS is their biorepository. They just started collecting data in the last year, after two years of preparation and addressing many of the issues we will discuss today.

A fundamental ethical question for GAPPS is that pregnant woman are a vulnerable population.

Edwards, Russell, and Sewards are introduced by Sorensen

The revolution is a shift from reactive to proactive in health and biomedical research. We are looking at genetics, the environment, and interactions between them and changing medicine for the future. Medicine is becoming more personal with increased understanding and accessibility of genomics. Patients and consumers are playing a key role, participating more in determining their own medical future.

“Biobanks are more than libraries of flesh,” Sorensen declared, in response to some popular media descriptions of repositories. (CityClub blogger Sara Neppl clarified that Sorensen was quoting this Wired magazine article from June 2010 that referred to biobanks as “libraries of flesh.”)

Biobanks combine biological specimens of organs, blood, and so on with data about health and lifestyle. Combining all of this is very powerful but also requires that we proactively and comprehensively address issues of public trust and ethics in research. Today’s panel discussion is one more step in that effort.

Moderator Gretchen Sorensen introduces our topic:

But collecting large banks of such personal information raises questions among experts and public alike: How are biorepositories best governed? Can I trust that my specimens and health information are secure? What are the minimal standards of donor consent for working with specimens and information? What other ethical and legal issues are there to think about? And to what extent is the promise of medical progress from biorepositories real?

I am writing today from the event itself, 25 October 2010 at CityClub Seattle and will publish a series of short posts over the next hour.

A photo of me at my laptop today:

Blog author Brian Glanz, with laptop.

— Brian Glanz for NWABR

(KPLU) – More and more jobs call for training in science. This summer some local teachers are out to improve the quality of that training. KPLU’s Gary Davis caught up with a Seattle program that brings science teachers into cutting-edge laboratories. Read More…

NWABR is proud to announce the availability of a discussion guide to enhance active reading and consideration of issues raised in The Immortal Life of Henrietta Lacks (Crown Publishers, 2010). This guide is open for use by anyone who would like to facilitate discussions or personally reflect on lessons from the book.

The Immortal Life of Henrietta Lacks is journalist Rebecca Skloot’s quest to tell the true story about the woman (and her family) whose cancer cells were the first human cells grown successfully in a laboratory. Skloot masterfully opens the door for readers to explore current bioethics issues that are surprisingly relevant to most, if not all, people. The story is one of cutting edge biomedical research, potential harms and benefits of participating in research, the nature and purpose of information gleaned from our bodies, the influence of faith and family history on the way people perceive their experiences, and the great potential of relationships to heal or deepen our wounds. The opportunity to discuss lessons from this book for us as researchers and research participants is rich; we all have much to learn regarding what is important in building research practices that are trustworthy, ethical and effective.

To learn more about the author or book, visit Rebecca Skloot’s website where she also features our discussion guide: http://rebeccaskloot.com/the-immortal-life.

The Immortal Life of Henrietta Lacks: A Discussion Guide is a collaboration between Northwest Association for Biomedical Research and University of Washington with funding from NIH grant 1 UL1 RR 025014.