Open Source 3d Printed Prosthetics

Good morning everyone

I heard a great story on KUOW this morning about Ivan Owen a co-creator of a design that allows users to submit their measurements and then print a prosthetic hand!

You can hear the story at and look for the story “How to print a hand from home”.

Owen originally designed a program to allow a parts to be printed in a 3d printer for a person that needed a prosthetic hand. Normally such hands costs tens of thousands of dollars and they are often out of the reach of people who need them the most. Once the first design was completed he made the code available to the open source community and the program has now been tweaked so that people can include their palm and arm measurements to allow a correct sizing of the design for each person’s unique body.

They can then print out the various components on a 3d printer and following some assembly start using their new hand. In the story Owen recounts how a teenager printed a hand for a friend at their local public library.

If you are interested in printing a hand – or just seeing lots of photos of very happy kids go to Owen’s site:


Ken Gordon
Executive Director
Northwest Association for Biomedical Research

NIH Funding and Biomedical Research

Good morning all

There is a great story on NPR this morning about the impact on research of reductions in NIH funding.

The story this morning by Richard Harris and Robert Benincasa details the boom and bust environment created by major changes to NIH funding.

Amongst other things the story notes that the NIH funding in the past has driven the development of innovation in biomedical research and the current cuts have meant that labs – and the potential developments associated with those labs – are both closing and all of the hard won knowledge is being lost.

Adding salt to the wounds of lost funding, the article also refers to those scientists who are still working in the field only doing so because of the inordinate amount of time that key researchers are spending on fundraising.

I love fundraising – but I am also not a brilliant scientist. Taking such people away from their core work is such a crying shame for the entire field.

NWABR lost its own NIH funding in 2013 with the commensurate loss of amazing staff and institutional knowledge. The rebuilding process is hard and after over a year we are starting to regain some of the traction that was lost. The NPR story shows that this is an all too familiar story across the United States. The organizational, human, research and community costs of these losses is incalculable.

I am going to enjoy this series of stories as the roll out over the next week.

Update 9/10/14. Part two of the series rolled out today. This part focusses on scientists being lost to the industry and the world of science because of the funding crunch. Here it here.

Take care.

Ken Gordon
Executive Director
Northwest Association of Biomedical Research

Fold-it and Ebola

During this last summer NWABR provided two summer camps for high school students. Each of these camps had a biomedical research focus. One focused on DIY science and the other focused on Proteins.

The Protein camp was hosted at the Paul G. Allen Center for Computer Science and Engineering. One of the components of this camp was to introduce students to a computer game call Fold-it. This free game allowed students to practice building and manipulating 3D models of proteins – so that they could better understand diseases and treatments.

We have had the pleasure over the summer of watching these really smart students use this programs to undertake manipulations that ultimately can lead into the development of new approaches to disease.

The Fold-it program was highlighted in the a Seattle Times article on August 25, 2014. The article highlights how approximately 500 of the registered more than 300,000 Fold-it gamers have designed theoretical proteins that could be instrumental in developing ways to reduce the impact of the Ebola virus.

At NWABR we are excited that high school students attending the Protein camp are at the cutting edge of such important science and medical breakthroughs.


Ken Gordon
Executive Director

Posted in All

OHRP Research Community Forum- We Have to Speak Up, Ken Gordon

It is my pleasure to also welcome you to the OHRP Research Community Forum, and what is now our annual IRB conference. We hope to be able to confirm the date for next year’s IRB in the next few days.

The mission of NWABR is to promote the public’s trust in biomedical research and its ethical conduct. The first part of our Mission focuses on the public’s trust. All of the research shows that members of the public have less and less trust in institutions and in biomedical research.

According to Gallup, the trust levels for biomedical and animal based research, especially among young people, are near all-time lows. There are similar trends about trust is science, Trust in governments and trust in institutions.

As a non-scientist, I value how smart all of you are. I value research. I value learning. However, in the broader community the anti-science movement is swaying public opinion in areas as diverse as climate change, evolution and even when it comes to basic medical procedures such as childhood vaccinations.

This is an extremely worrying trend for the community in general and for the biomedical research field in particular. Every single person in this room has benefited from the sea change in medical practice that has occurred over the last century – with much of that sea change being driven by biomedical research.

If we lose the public’s trust in our work then our ability to continue to drive change will come to a shuddering stop.

But I want to stop talking in generalities and come back to the theme of this OHRP Community Research Forum – Managing Under Pressure.

As a group who really cares about research how would it feel if you woke up to see a headline like this in the front page of the Seattle Times. “Harborview to test drug on the unconscious without consent”.

For those of you who have not read the article, my very simple summary is that Harborview (one of the NW’s largest public trauma hospitals) is one partner in a larger study and they wish to test a drug that has been used to help control bleeding in other parts of our bodies, to see whether it is effective to control inter-cranial bleeding that has occurred due to a head trauma.

The extent of the head trauma means that patients are likely unconscious or very confused, so Harborview received IRB approval to undertake non-consent trials.

I don’t know this for sure, but I guess that the release of the information about this trial to the Seattle Times was undertaken as a component of an IRB requirement that Harborview has to let the community in general, and target communities in particular, know that this non-consent trial was going to happen and to let people know that there are opportunities to opt out of the trial.

And just for full disclosure we at NWABR are planning to host a Community Conversation that Harborview will support to discuss the issues around such a non-consent trial.

In my opinion this article was not particularly balanced. It had an inflammatory headline. It compared human research subjects to lab rats, it had a paragraph that links this study to other non-related studies where research subjects died at higher rates, it inferred that researchers don’t care about consent and it also drew negative conclusions from Dr. Bulger’s previous research.

If I was a researcher I would not want to wake up to this article.

However, if you then dive into the murky world of the comments section you see that there is a sector of society who really really really distrusts science, scientists, research and everything involved in the process. The comments in relation to this article mentioned Nazi’s twice, the Medical Mafia several times, the words “creepy”, “violence”, “forced”, “tortured”, “dangerous”, “obscene”, “self-aggrandizement”, “violation” and “killing”.

The professionals involved were also accused of being in the pockets of drug companies, of acting like god and of doing unauthorized medical experimentation.

I know that as a general rule people who comment online in relation to newspaper articles do not reflect the broader community. But I want to make the argument that such comments among many others are driving community members to distrust our work. Given that we think this work is important, you all told me that earlier when you said that you care about research, then something has to change.

The status quo of us all playing nice, of us being incredibly competent at talking to each other and talking to funders, but not to the public, of hunkering down in the face of criticism, and never being proactive about telling the world about our research is not working. We are losing this fight.

In an article by Andrew Rich published in the Stanford Social Innovation review, he argues that the war for ideas is being clearly one by conservative groups. However, this is not because the conservative groups have more money. Rich’s research clearly shows that there are more mainstream and progressive organizations funding research and that they provide much more money for mainstream and progressive research.

So why is the war for ideas being lost so soundly by the mainstream and progressive communities?

The article suggests three things:

a. Conservative groups tend to fund operating costs rather than funding individual projects and programs. This means that the conservative researchers build capacity over time and are not so reliant on the hand to mouth existence.

b. Conservative groups are not so concerned about academic neutrality. They therefore will focus on activities that support their underlying ideology.

c. Conservative groups spend several hundred percent more on dissemination and external communications.

So this is not a political conference – and I am making no judgment calls about this big picture war of ideas. But I do think that as a research community we need to be thinking about how we battle to get our ideas out into the world. I think we can learn from this research on the nature of ideological debates to determine how we best position ourselves to get our message out.

The best idea in the world that is not disseminated and understood by the public has no power, credibility or ability to make change. The worst ideas out there can do unceasing damage if we can’t immediately respond and debunk the same. Just think “Death Panels”.

This war of ideas plays out in our everyday lives.

As an example I have recently had discussions with people who are opposed to immunizations. These people did not believe in immunizations and when we present data that shows the compelling evidence about the importance of immunizations both to individuals and also to the wider community they say “we don’t trust western science”.

I want to be clear these are not dumb people. I also want to acknowledge that there is room for discussion about immunizations, about efficacy, about whether some immunizations are more important than others. However, the irrational belief that western science cannot be trusted is so blatantly unfounded that it leaves no room to even start such discussions.

Within the IRB world we have become incredibly good at ensuring that our processes for approving protocols are robust, solid, and that the needs of human research subjects are taken into account. What we have not been as good at is ensuring that the general public knows that once an IRB has approved a protocol that needs of human research subjects have been addressed front and center.

What we have not been so good at is ensuring the general public understands that the science generated by this research is also robust and is on a daily basis changing our care and improving our lives. What we have not been so good at is showing how ludicrous the anti-science movement is. By trying to be humble and neutral we have allowed a fertile ground for anti-science to proliferate.

This sermon is obviously well beyond the bounds of an IRB conference, and is also somewhat wasted on the choir as I know that you all know this. So to choral this back to the topic wouldn’t it be good if an IRB approval was up there with the Good Housekeeping Seal of Approval. Slide 11.

If I was a community member on an IRB I would want it to be known that my work had made research better for the community. So how do we achieve this Nirvana. Firstly, we have to collectively come out of the closet. We have to tell the world, within the constraints of commercial secrets, what we are doing. We need to share the successes and failures in our research and our research design. We need to make strides to take our work out to the diverse communities where our work has real meaning. We need to be able to articulate this incredibly complex science in ways that translate to the general public.

We have to unabashedly promote ourselves. We need to tell our stories again and again and again.These are the necessary steps to build and to rebuild public trust. Trust requires openness, honesty, personal connections, listening, understanding and reciprocity. I think that these are all values that we can ascribe to.

Today’s conference has been set up with many of these ideas at the front of our mind. Our keynote speaker who will immediately follow me, Dr. Deborah Bowen will talk about the complexity of involving stakeholders, particularly diverse stakeholders, in the research process.

We have also planned three streams broadly called Basic, Research and Regulatory. The Basic stream is designed for people who are new to the IRB world and need to come up to speed as to why we do all of this work. The Research stream is aimed at researchers who work with IRBs so that they can understand the processes, and negotiate the highways and byways of IRB approval, ethics and communication. The Regulatory stream is for those staff who work to keep IRBs on the straight and narrow.

We, the staff, volunteers and Board at NWABR hope that you enjoy this conference. If we can do things to improve it then please tell us. As previously mentioned the IRB component of this conference will now be an annual activity so we need your feedback so that we can keep the content relevant and developmental.

I also need to formally thank you all for being here. I want to thank our co-host OHRP and our major sponsors Quorum Review, Juuva and the CITI Program at the University of Miami.


Posted in All


This is a repost of an article published today by Americans for Medical Progress:

The compelling saga of the two American medical workers who contracted Ebola in West Africa provides a dramatic case study in the value of current animal research.

Dr. Kent Brantly, believed to be just hours from death, became the first human ever to be given an experimental medication that had only before been tested in animals. Within an hour, his condition dramatically improved – in the words of doctors on the scene, “miraculously”. After being airlifted to the U.S., Brantly was able to walk out of the ambulance and into the isolation facility at Emory University, where he continues to recover.

Nancy Writebol, a medical missionary working with Brantly, has received two doses of the medication and has also shown “significant improvement”, according to sources. She is expected to arrive at Emory later today.

The medication, zMapp, was developed by the small San Diego biotech Mapp Biopharmaceutical, which has been working with NIH and the Department of Defense for several years in a quest to develop a treatment for Ebola.

zMapp is a three-mouse monoclonal antibody: mice were exposed to fragments of the Ebola virus and then the antibodies generated within the mice’s blood were harvested to create the medicine. The drug reportedly had shown promise in primates, but even in those experiments, just eight monkeys with Ebola received the treatment within 48 hours of being infected. They all survived, however, a monkey treated outside of that exposure window did not survive.

So little is yet known about the safety and effectiveness of this treatment, it’s speculated that the FDA might have allowed it to be used by the two medical missionaries under the ‘compassionate use’ exemption.

In media interviews, Dr. Anthony Fauci, Director of the National Institute for Allergy Infectious Diseases, said it is too early to know if the drug is successful – that it couldn’t be proven until the treatment is tested in “a clinical trial with a whole bunch of people.” He noted that NIAID is developing an Ebola vaccine candidate that has beem effective in protecting monkeys from Ebola. NIAID plans to start Phase I clinical trials next month.

CNN’s Sanjay Gupta was the first to comprehensively report on the role zMapp apparently played in this medical drama, and its implications for future Ebola treatment.

Despite the results reported in these two cases, there is still a long road ahead, with many logistical and economic challenges, before for any Ebola treatment will be approved for widespread use.

Here are some links to further reading/viewing:

CNN’s Sanjay Gupta was the first to comprehensively report on the role zMapp apparently played in this medical drama, and its implications for future Ebola treatment. Gupta’s video report on Brantly’s treatment, and a Q&A about ZMapp and other medicines and vaccines in the pipeline. There’s also a more detailed report by Gupta on the decision to administer zMapp to Brantly and Writebol.

John Timmer, Science Editor for Ars Technica, has an article detailing Mapp Biopharmaceutical’s research. The article also offers a link to scientific papers published by Mapp, and points to this most recent one published by Science Translational Medicine a year ago.

The first author of that report is James Pettitt of the U.S. Army Medical Research Institute of Infectious Diseases (USAMRIDD), which issued a press release on the paper’s publication last year.

Bloomberg features an article on the tiny Mapp Biopharmaceutical, as well as reactions of several American scientists to the use of zMapp for the medical missionaries.

Top science writer Maggie Fox, now with NBC, reports on the economic and logistical challenges of bringing an Ebola treatment or vaccine to market.

The Center for Disease Control offers a page of updates on the outbreak in West Africa.

Annual Fundraising Gala – Huge Success!

Dear all

This is a summary of the presentation that I made at the annual NWABR fundraising event held this last Friday, June the 20th. The event was held at the Museum of History and Industry (MOHAI) and the staff, board and volunteers were joined by approximately 150 guests to both celebrate NWABR’s 25 years of building public trust and biomedical research.

In NZ, where I am from we start presentations the following way: Tena kouto, Tena Kouto, Tena Ra Koutou Katoa. Ngau Mai Haere Mai. I acknowledge and honor you once. I acknowledge and honor you twice. I acknowledge and honor everyone here three times.

Thank you everyone. My name is Ken Gordon and as you all now know I am the new ED at NWABR.

And this is the part of the evening that everyone loves as we break down all of the normal social norms and ask you for money! So I thought I would lighten things up a wee bit and also let you know why the Board entrusted me with this role.
As Troy just mentioned I started with NWABR a few months ago and a question that I keep getting asked is “Why did the Board Hire Me?”

You see the thing is I am not a PhD, a medical doctor, a scientist, a biomedical researcher. NWABR has had a history of hiring and growing these specialists and when they hired me the Board definitely broke the mold.

I have been mulling this over myself – and here are some of the thoughts that have come to mind.

First and foremost I am a kiwi. Of course when I say this you immediately think of a somewhat small, non-descript, slightly brown and fuzzy fruit.

But when New Zealanders talk about kiwis we really mean the national bird of NZ which epitomizes our personalities – i.e. small, non-descript, slightly brown and fuzzy. These are, in my humble opinion all remarkable qualities – but alas – Cheryl Weaver (NWABR’s President) insists that she did not hire me for my fuzziness.

Cheryl insists that I was hired because of the gravitas that I can bring to NWABR. What I deduced from this is that she meant that I had:
• Had a cool accent
• Could dress up nicely
• In a pinch I could fall back on my six years of Maori language instruction, which is particularly useful since I can talk to you and no one else really knows what I am saying.

I was also hired because I am not afraid to jump in, get my hands dirty and can definitely go the distance – having now completed 14 marathons and one 50 mile ultra-marathon.

I also do have a personal connection with Biomedical Research – brought about entirely from a user’s perspective. When I moved here 9 years ago my step daughter, Eva, who was 4 at the time, was very impressed that I had been to the Emergency Room more than 20 times.

I can truly say that if it was not for the great strides in biomedical research the only part of me that would be able to be in front of you today would be my right elbow as it is the only part of my body that has not directly benefited from some form of direct medical intervention.

Lastly of course I also bring the middle earth connection. I have hairy toes and big feet, I’m comfortable with eating many meals a day; have an insatiable appetite for coffee, and am dependable and honest. These are all vital skills for helping NWABR to rebuild relationships with you our members.

That is, I’m good on my feet, love meeting in cafes, will follow through on commitments and I realize that my job is to listen!!!

But more seriously we are honored and humbled that you have been able to join us here at MOHAI this evening. This evening is of course a fundraiser and it is also a celebration of biomedical research and before I do anything else I do want to once again thank Nancy Alvord, Larry Corey, Stephen Wakefield and Bergen McMurray for joining us here tonight.

This evening is more importantly an opportunity to:
• give the message that we are still around – 25 years and going strong!
• show off some of the breadth of our work, and
• to reconnect with our members and other supporters.

The mission of NWABR is to promote the public’s trust in biomedical research and its ethical conduct.

The first part of our Mission focuses on the public’s trust. All of the research shows that members of the public have less and less trust in institutions and in biomedical research.

According to Gallup the trust levels for biomedical and animal based research especially amongst young people are now at near all-time low levels. There are similar trends about Trust is science, Trust in governments and Trust in institutions.

As a non-scientist I value how smart all of you are. I value research. I value learning. However, in the broader community the anti-science movement is swaying public opinion in areas as diverse as climate change, evolution and even basis medical procedures such as childhood vaccinations.

This is an extremely worrying trend for the community in general and for the biomedical research field in particular. Every single person in this room has benefitted from the sea change in medical practice that has occurred over the last century – with much of that sea change being driven by biomedical research.

If we lose the public’s trust in our work then our ability to continue to drive change will come to a shuddering stop. This is fundamentally important as in so many areas you are just on the cusp of making significant progress.
New technologies, better understanding of genetics, proteins and human systems are exploding our knowledge base about the diseases and conditions that impact us all.

It is therefore imperative that we undertake the work necessary to start to rebuild the public’s trust. This is not a quick or easy process. However, we know from many other areas, such as the truth and reconciliation commissions in South Africa, that Trust requires openness, honesty, personal connections, listening, understanding and reciprocity.
NWABR works to build trust and understanding in Biomedical Research. Examples of this work includes the Middle School essay and High school science competitions and with its summer biomed camps. In each of these programs we match young people with preceptors who can guide them through the development of a science based project. Often these preceptors become role models for these developing young scientists.

In our community programs we have similar goals. We aim to connect professionals working in the biomedical field with members of the community and thereby encourage mutual understanding and learning.
These programs obviously directly impact the individuals concerned, and they also impact families, peers, teachers and the wider community.

The second part of our mission focuses on ethics. We work with our members to ensure that both human and animal research subjects are cared for appropriately and treated ethically. The exercise that Juan Cotto took you through this evening is a simplified version of a case that is used for training of committee members that oversee human subject research.

When issues pop up for our members in relation to their research we can be a sounding board, a thought partner, a public supporter and a trusted friend.

My staff and I have been on a listening tour with members and we are already responding to the ideas we are hearing. As an example many members have talked about the importance of keeping their facilities and staff safe – and in response we will facilitate a securing and crisis communications conference.

For our members, their work is complicated and sometimes controversial. We encourage them at the very least to become proficient communicators of the work that they do. In the Research Forum we are hosting in July, for example, we will be taking participants through a process of learning how to effectively articulate their work to regulators and the public.
Communication is an undergirding requirement for understanding.

We think working on the public’s trust reinforces our work with ethics. The work with ethics then in turn encourages the public trust. This becomes a virtuous cycle.

One of the reasons that we asked Bergen McMurray to speak tonight is that Katriona’s story epitomizes the huge impacts that these our relatively simple programs can have. Over NWABR’s 25 years we estimate that we have directly worked with 17,000 people in the medical research community and a further 7,000 students. If just one person in a hundred gets inspired, in the way that Katriona was, then the real impacts in the world would be immeasurable. Butterfly effects that we can see in the real world.

To do this work we depend on membership fees, sponsorships and donations from foundations and from individuals. We also absolutely depend on volunteers who give us over a hundred thousand dollars’ worth of time each year.

This work is incredibly important so I’m asking you tonight to consider making a donation to NWABR tonight. On your table you have a pledge card. If you placed a bid for the dessert dash then please record this on the pledge card, we are working on the honesty system here – but please feel free to round those numbers up if you really liked the dessert.

Please also consider making an additional donation to NWABR. No amount is too small or for that matter too large. So please fill out this card and pass it to one of our volunteers who will circulate in a few minutes to collect them.

If you are not sure yet about NWABR and our work – don’t make a gift tonight. But write on the card that you would like to meet with me, the NWABR staff or a Board member and we will come to you to find out more about you, your work and how we may be able to assist each other.

You can also if you wish, note down your desire to volunteer for NWABR.

If you do make a gift your funds will be used to continue to support our work of building the public’s trust in biomedical research and its ethical conduct.
Thank you so much for your generosity.

Thank you for joining us here tonight. Thank you for supporting NWABR and biomedical research. Thank you for the amazing work that you do. I am new to this community. But I already can characterize you as smart, passionate and caring. I can’t imagine a better group of supporters or a better group of people for this field of work.

And just to reinforce my gravitas:
Te Aroha, Te Whakapono
Mai te rangimarie – tatou tatou ai.

This is a brief Maori proverbial saying that acknowledges the importance of love peace and understanding in all the work that you do for the benefit of the entire community. Thank you.
Ken Gordon
Executive Director

Posted in All

Community Conversation, A Life Well Lived, Even Facing Death

Imagine you’ve just been given the news of a life-limiting illness.  The treatment will make you very ill—worse than you feel now—and offers a 16% chance of survival past your 6 week lifespan prognosis.  What will you do? What facts do you need? Who do you want to aid your decision? What do you want the end of your life to look like? Beyond these questions, you are facing your mortality—a difficult pill to swallow.  Participants in the A Life Well Lived, Even Facing Death Community Conversation wrestled with these questions. They discussed our cultural preferences for end of life care; social concerns; why the cost of end of life care in America outpaces other industrialized countries, and what it says about our culture; economic considerations; and things we can all do now to prepare ourselves for the end of life. Guests engaged in conversations in small groups, over a glass of wine or espresso, and listened to one another’s stories of grief and frustration. The Conversation encouraged us all to have courageous conversations about end of life with friends and family members, to consider the macroeconomic picture, and inspired us to live our lives to the fullest now so that, when the end is near, we can be at peace. 

How, then, do we bring up this conversation with our friends and family? Experts suggested initiating this conversation when mortality is in the mind of your family—when a media story breaks or when a friend has a serious illness.  Starters can include “When Grandma died, what was that like for you?” or “How would you complete this sentence: ‘What matters to me at the end of my life is….’”  People also shared resources like Aging with Dignity and the Washington State Hospice and Palliative Care Organization.

Attendees identified barriers to talking about death including cultural beliefs, lack of appointment time with care providers, family and friends’ reluctance to squelch hope for a cure, patients’ reluctance to ‘give up,’ and the desire of care providers to succeed—that is to find a cure.  When we came together as a large group of 45, it became apparent that two specific issues complicate The Conversation: the art of projecting patient prognoses—that is, how do you know when a treatment won’t help length or quality of life?, and the difficulty of recommending hospice care rather than aggressive medical treatments because ‘saying no feels like pinching out the wick of hope.’ 

We touched on finding the balance between the ethical principles of patient autonomy and social justice.  In the United States especially, we want to give patients every opportunity to try any and all medical treatments, even if the treatments do not extend length or quality of life.  This value is in tension with the social justice of managing public costs and scarce resources for medical care.  One participant observed, “because we have an informed, invested public, the patient can find someone to treat them if they have enough resources and money.”  Resolution of this quandary included more research and advocacy for treatments and approaches that support quality of life, such as palliative and hospice care, and tailored training for providers.

There is often no correct answer to the questions we have posed. However, at NWABR Community Conversations, we engage the public and professionals in these difficult, yet informing, discussions. Let’s consider Morrie Schwartz’s reflection on his journey with ALS. He has much to teach us about creating a meaningful death-and life-, insofar as we have control over it: “Everyone knows they’re going to die, but nobody believes it.  If we did we would do things differently….We’d be prepared for it at any time. That’s better. That way you can actually be more involved in your life while you’re living (tuesdays with Morrie by Mitch Albom).” Take from this Conversation what you can, but we know that a life well lived is up to us every second, every minute, of everyday. Talk with your loved ones, speak with your doctors, and live your life to the fullest.


The NWABR Community Conversation series is sponsored in part by Institute of Translational Health Sciences and explores topics in biomedical science and its role in society, connecting people to the biomedical research community. Add your voice to an engaging and intimate discussion with other curious and open-minded individuals.  Learning from each other, our goal is to advance more responsive and thoughtful biomedical research. Everyone is welcome.