Better Them Than Me? –Guest Blogger Saradha S.

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

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

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

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

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

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

Big Data Not a Cure-All in Medicine

Happy New Year

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

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

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

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

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

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

Take care out there.

Regards

Ken Gordon

Executive Director

What can your genes tell you? Ask the Portland Community Conversation

October 21, 2014

For the crowd that gathered at the Lucky Lab Pub, the Conversation came down to two things: 1) what is the balance between individual rights to information and Food and Drug Administration (FDA) device regulation with direct-to-consumer genetic testing like that provided by 23andMe? and 2) how will individuals interpret and act upon information they receive from direct-to-consumer genetic tests?

Summer Cox, from the Oregon Health Authority Genetics Program and Shaban Demirel, from Legacy Research Institute, facilitated this Conversation. Summer provided expert information and Shaban reflected on his personal experience using the 23andMe service before its range of health-related services were disallowed.

Some people felt an absolute right to be able to purchase a genetic testing service and receive information about their health risk for diseases, the way their body processes drugs like statins and caffeine and whether they have or ‘carry’ any inherited conditions. After all, “it’s not the FDA’s role to censor knowledge.” There was little debate in the room about the accuracy of genetic sequencing itself; rather people were concerned about the validity and reliability of the meaning of the genetic data provided by 23andMe. Some meaning for raw genetic data was based only on studies of 750 people, maybe not a large enough sample for statistical power; some diseases are not well-studied enough to have full knowledge of the genetic input. The more serious a condition, the higher the stakes for accuracy. Among those concerned, one laid bare the issue using a relatable gasoline analogy: “You want the government to protect you against the bad guys. If you pull into the gas station and buy a gallon of gas, you want it to be a gallon, and you want it to be gas!”—this is the same reason the FDA has ordered 23andMe to stop providing health-related genetic information to consumers—they want the genetic tests to do what they promise and do so accurately.

But then again…is genetic sequencing and interpretation really a device? Maybe the ‘book of regulations’ isn’t broad enough in scope to cover this kind of test.

Attendees were also mindful that once these test results land in your lap, how will you take the information? How will you respond? The company 23andMe is very aware of this concern and when they previously offered the health-related tests, they directed the consumer through a series of deeper and deeper consent to learn their genetic information on more and more serious conditions. As Shaban pointed out, “you cannot unlearn this information.” At one time, 23andMe offered predicted health risk for 122 diseases and 53 inherited conditions. That’s a lot of data to take in for oneself and/or ones children. “What if one of your results is really important? 122 traits? It’s overwhelming emotionally. It’s expensive to follow up on.” Attendees agreed that most people react emotionally first, before their rational brain kicks in to consider the information.

Along the same lines, attendees raised the concern that the meaning of predicted risk for a condition or disease will be read differently person to person. Most people lack a strong understanding of ‘risk.’ Some may be truly scared when they read of their three-fold increased risk for atrial fibrillation over the general population; some will read further and see this only elevates their risk from 1.7% to 5%, which is a small number—but others will be hung up on the three-fold higher risk and panic.

And yet, with all this, attendees acknowledged that there is uncertainty in all things like this—in the meaning of our genetic information and the meaning of health-related tests we take at the doctor’s office. “The public has an inflated sense that the answers our doctors give us are black and white. Maybe bringing to light the uncertainty is a good thing.”

We also shared some laughs. An attendee shared with the whole group that when he was diagnosed with glaucoma, he was in disbelief. He couldn’t process the reality of that diagnosis-given in his doctor’s office– and imagined that many people sitting with 23andMe data might feel the same way. He went so far as to say that he was proposing alternative diagnoses, “Maybe I just have a really big optic nerve!” And that is when another attendee urged from the other side of the room, “Own your phenotype!” The room erupted in laughter.

In the end, we weighed and applied the ethics principles of autonomy and beneficence, enjoyed our pints and chips, joked about hairy big toes—and Hobbits– and dry earwax, and got one another thinking. Some people sent away for 23andMe testing kits. Some wished they could still receive health-related genetic information from 23andMe. And the rest of us went away wondering if we really receive a gallon of gasoline when we pay for one.

Thanks Everyone! See you soon again in Portland…

Jen Wroblewski

NWABR Fall Update

October 17, 2012
NWABR Fall Education Update

The Northwest Association for Biomedical Research is pleased to announce a number of upcoming events that reflect our commitment to engaging students, teachers and the public in dialogue about the importance of research.

Washington Science Teachers Association (WSTA)
Jeanne Chowning and Joan Griswold will be presenting sessions highlighting our curricular resources on Bioethics, Bioinformatics, Stem Cells and Animal Research at the WSTA conference in Yakima, Washington, on Saturday and Sunday, October 20 – 21, 2012.

National Association of Biology Teachers (NABT)
We will also be presenting sessions on Bioethics, Bioinformatics, Animal Research, Socratic Seminars and Stem Cells at the NABT conference in Dallas, Texas, November 1 – 3, 2012.

Information on sessions, times and locations for both conferences can be found at: www.nwabr.org/landing/teachers.

Life Sciences Research Weekend
Everyone is invited to experience science at its finest: fun, interactive and educational. NWABR and Pacific Science Center are co-presenting this sixth annual event. Over twenty companies and research institutions will have hands-on activities at Pacific Science Center on November 2 – 4, 2012. Meet the scientists on Friday 10am – 2pm; Saturday and Sunday 10am – 5pm. Complete list of exhibitors: http://nwabr.org/community/life-sciences-research-weekend

Other educational updates
Curriculum: Understanding Research and Ethics
Two new curricular modules are nearing completion and available for classroom use. The Nature of Scientific Research (www.nwabr.org/curriculum/nature-research) and The Science and Ethics of Humans in Research (www.nwabr.org/curriculum/humans-research) provide hands-on activities, ethical background, and historical and current case-studies to support students in understanding the intersection of ethics and biomedical research.

Teacher Workshops: Applications of Biotechnology in the Classroom
This three-part teacher professional development workshop series will be held in partnership with Shoreline Community College’s Amgen Bruce Wallace Program and will take place December 7-8, 2012, February 13-14, 2013 and June 20-22, 2013. Whether you’re new to working with DNA and agarose gels or an experienced middle or high school teacher, these workshops are designed to be taken individually or in series based on your needs and skills. Find out more at:http://www.nwabr.org/shoreline-partnership-workshop

New Animation:  DNA Barcoding
This two-part animation accompanies our advanced bioinformatics curriculum Using Bioinformatics: Genetic Research and explains the steps involved in DNA barcoding, from finding a sample to analyzing a DNA sequence.  Visit the advanced bioinformatics curriculum page and click on the “Resources” tab. http://www.nwabr.org/curriculum/advanced-bioinformatics-genetic-research

Publication: The American Biology Teacher
An activity from our introductory bioinformatics curriculum was recently highlighted in the article Modeling Protein Structure and Function: Pencil Transferase published in the October 2012 issue of The American Biology Teacher. The article can be found here: http://tinyurl.com/8cs8bku

NWABR would like to thank the 43 teachers, 34 students and 92 volunteers from 12 NWABR member institutions who participated in our CURE and ITEST summer programs in July and August! Check out student comments about the Student Fellow’s program at http://www.youtube.com/watch?v=q2qgtASo-sY

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The “Collaborations to Understand Research and Ethics” (CURE) program is supported by a Science Education Partnership Award grant from the National Center for Research Resources and the Division of Program Coordination, Planning, and Strategic Initiatives of the National Institutes of Health through Grant Number R25OD011138.

The “Innovative Technology Experiences for Students and Teachers” (ITEST) program is supported by a grant award from the National Science Foundation, DRL-0833779

NWABR at 2012 National Science Teachers Association Conference

Join NWABR at the National Science Teachers Association Conference in Indianapolis this week!

NWABR and Science Education Partners at NSTA Seattle 2011

Come join Jeanne Chowning, NWABR Director of Education, and Joan Griswold, Curriculum Design Lead, at NSTA Indianapolis 2012! We will present several hands-on lessons from our popular high school curriculum units.  These resources are designed to introduce teachers and students to cutting-edge science topics and to provide educators with structured frameworks for discussing related ethical issues.  Click on the links below to view our curricular materials on our website!

Sessions include:

The Science and Ethics of Animal Research
Thursday, March 29, 8am-9am
JW Marriott, Grand Ballroom 4

Integrating Bioinformatics into Introductory Biology Courses
Thursday, March 29, 2pm-3pm
JW Marriott, Grand Ballroom 4

Stem Cells: Science and Ethics
Friday, March 30
12:30pm-1:30pm
Indiana Convention Center, 204

We hope to see you there!

Support for NWABR’s curriculum development is provided by a Science Education Partnership Award from the National Center for Research Resources and the Division of Program Coordination, Planning, and Strategic Initiatives of the National Institutes of Health through Grant Number R25OD011138 and by an Innovative Technology Experiences for Students and Teachers award from the National Science Foundation, DRL 0833779.