At Home Ethics During COVID-19

In my work at NWABR I often think about things with an ethics filter. The discipline of bioethics can sometimes seem like a hypothetical exercise, but this pandemic is the real deal and we need to listen to our ethicists. For me, the SARS-Cov-2 novel coronavirus pandemic highlights two key ethical dilemmas:

-How do we allocate scarce medical resources?
-How can everyone enact behaviors and choices that maximize the best outcomes for the most people?

I assert that there is an ethical imperative for each person to do their part to stretch resources and maximize positive outcomes. Many factors affect individual roles, therefore we all have different obligations to the ultimate outcome, and to one another, guided by our capacity. The ethical challenge here is that we have to examine our capacity to contribute honestly and with the sure knowledge that our contributions will not be cost free.

Here is my situation. I still have an income and live in a house with my three young kids. I am well-connected to a community and can work from home while I teach my three kids. I have asthma but otherwise we are healthy. I am hyper-aware that I have extra resources when many don’t have enough. How can I help others to maximize good outcomes?

My children and I are staying home. We aren’t out playing soccer with friends or touching playground equipment. When I get take out, groceries or packages delivered, I meticulously bring these items into my home. Everything seems to take more time during this season. I am doing my best to keep me and mine healthy so we do not have to use scarce resources; I even reduced my daughter’s dislocated kneecap to save mask use by first responders. We are supporting local restaurants and donating to non-profits.

Will it be enough if everyone does everything they can? I hope so.

Leaders and health providers across the globe right now are juggling these ethical issues on a huge scale. Who receives resource-depleting treatments? How much liberty do we need to forego for the common good? How do you balance the competing needs of the linked economic and health crises?

Biomedical ethicists have been dealing with such issues for millennia and have provided a range of ethical frameworks to help think through such constraints. Let us listen more to our ethicists as we continue to work through this pandemic.

Stay tuned for more on this topic!

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

 

 

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

On July 23rd 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.

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.

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

 

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

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

We are hoping that our students…

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

— Jeanne Ting Chowning, NWABR Director of Education

Student Research Fellows East Day 6!

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.

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 5!

Genetic testing, the genetic basis of disease such as sickle-cell anemia, being Dr. Detectives with Dr. Oliver, AND new lab coats.

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.

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 4!

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.

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 3!

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.

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 2!

“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.

For cats, or lab spills?

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.

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 1!

Micropipetting Machine

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

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.

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

Science and the Human Heart

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

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

Jeanne Chowning Presents an NSTA Webinar on Teaching About Stem Cells

Today at 3:30 pm PST, 6:30 pm EST, Jeanne Chowning presents a webinar on teaching “The Science and Ethics of Stem Cell Research” at the high school level.

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.

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

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

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

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

Students Say

Students who experienced the Summit said:

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

Stem Cells 101

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

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

Dr. Tony Blau

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. Tony Blau

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.

Outside the Blau Lab at ISCRM
Upstairs at his lab’s front door, Dr. Blau pointed out a few notable neighbors in biomedical research in Seattle’s South Lake Union neighborhood.
Tony Blau, Chris Miller, and Kyle Rattray of the Blau Lab

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

Researchers Kyle Rattray and Kathy Davidson at the Blau Lab

Researchers Kyle Rattray and Kathy Davidson at the Blau Lab

Tony Blau Lab - cancer biology and stem cells

Tony Blau Lab - cancer biology and stem cells

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

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

Researcher Jay Gantz, UW Bioengineering

Researcher Jay Gantz, UW Bioengineering

Researcher Jay Gantz, UW Bioengineering

Researcher Jay Gantz, UW Bioengineering

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

Entering the Quellos High Throughput Screening Core

Dr. Tim Martins, Co-Director of the Quellos High Throughput Screening Core

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.

Tim Martins, Co-Director of the Quellos High Throughput Screening Core

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

Dr. Tim Martins with ready answers on our tour

It isn't *only* high-tech at the Quellos High Throughput Screening Core

Robots! at the Quellos High Throughput Screening Core

Robots! at the Quellos High Throughput Screening Core

Dr. Tim Martins 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, introduces planaria

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.

Plenty of PlanariaPlenty of Planaria

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.

Plenty of Planaria

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

Plenty of PlanariaPlenty of Planaria

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

Play-dough Egg and Sperm

Play-dough Egg and Sperm

Jeanne Chowning, MS, Director of Education at NWABR

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

modeling embryonic development with play-dough

modeling embryonic development with play-dough

Students in Dawn Tessandore's AP Biology class

modeling embryonic development with play-doughmodeling embryonic development with play-dough

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

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?

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?

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

Youth Ethics Summit 2011 was blogged by Brian Glanz for NWABR

Please reuse and remix! We share with a Creative Commons Attribution License.

Photography by Mohini Patel Glanz.

Youth Ethics Summit 2011 was presented by:

University of Washington School of Medicine

and

Northwest Association for Biomedical Research -- logo

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

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

Dr. Ruth Faden

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.

The Immortal Life of Henrietta LacksOngoing 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.

The 2011 Bodemer Lecture

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.

researchmatch logoWithout 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

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.

Experts answer bioethics questions from the public

Sorensen asks for questions from the general public, and the first is from a CityClub charter member, Maryel Duzan. She asks about “the white coat problem” — described generally as biases and problems introduced by personal interaction with a doctor or scientist. Examples of the problem cited by Duzan are that some people don’t remember what they’ve been told, or feel personally compelled toward consent by this interaction.

Photo 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.

Photo by Jeffrey Luke for CityClub Seattle

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.

Photo by Jeffrey Luke for CityClub Seattle

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?

Photo by Jeffrey Luke for CityClub Seattle

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.”

Photo by Jeffrey Luke for CityClub Seattle

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?”

Photo by Jeffrey Luke for CityClub Seattle

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.”

Photo by Jeffrey Luke for CityClub Seattle

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.

Photo by Jeffrey Luke for CityClub Seattle

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!

Photo by Jeffrey Luke for CityClub Seattle

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

Science communications in the developing world

Russell agrees and emphasizes that communication is a big factor in establishing trust, generally and not only for one population or another. People need to hear back how their contributions helped.

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.