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.

Local philanthropists drive biomedical impacts in the Northwest

Dear all

We are all so lucky to live here in the Pacific Northwest. We have this amazing environment, amazing weather (today for example the weather is perfect) and we live in a community of such smart and caring people.

We are also lucky that due to both current and past philanthropists – the Northwest is the place to be if you get sick. Lets be clear we are all going to die (and if you are interested in issues with end of life care you should see the planned Community Conversation that Jen Wroblewski is planning for June 3 titled “What do science, medicine and our culture tell us about end of life?”) – that said, the amazing research hospitals here in the Northwest will both prolong your life and improve the quality of care that we have during the period before we die.

There is no doubt that philanthropists have driven the development of the amazing research hospitals in our region. The Fred Hutchinson Cancer Research Center for example was inspired by the philanthropic efforts of Dr. William Hutchinson and was named for his brother Fred who died of cancer in 1964.

The philanthropic contributions to the Fred Hutchinson Cancer Research Center received a huge boost last month when the Bezos family donated $20m to support the Center’s work on cancer immunotherapy.

Paul Allen has been a major supporter of brain research with gifts of several hundred million dollars over the past decade.

The Gates Foundation in turn has been funding the development of innovative ways to stop diseases and improve health care.

There is no doubt that these significant gifts have driven a sea change in health care, and have put the Pacific Northwest at the leading edge of research driven health care improvements. I don’t ever want to get sick and I also note that getting sick here in the Northwest is one of the luckiest things that could happen – thanks in large part to all of these amazing donors.

Take care

Ken Gordon
Executive Director

To vaccinate or not to vaccinate – why is it even a question?

Dear all

Recently I had a long discussion with some fellow parents about the merits of vaccinations.  I have to confess that when it comes to vaccinations I have drunken the Kool-Aid.  I believe that vaccinations have been responsible for saving hundreds of millions of lives and improving the quality of life of billions more.  As a kid growing up in New Zealand I received all of the recommended vaccinations.  When I was in the process of moving to the United States the immigration service had to have proof of my vaccination history and the easiest way to achieve this was to be re-vaccinated for everything.  Also because I have worked in a number of developing countries I have received vaccinations for a range of less well-known lurgies.

In my view vaccinations are a public health issue.  We have been lucky in the developed world to not see epidemics of polio, whooping-cough, rubella, measles and the list goes on.  Vaccinations have been the major driver of the near eradication of many of these diseases.

It is therefore incredibly worrying to see that diseases like Polio starting to pick up in places like Syria and Pakistan.  Polio is a horrible disease that can be fatal and can lead to long periods of hospitalization and lifelong disabilities.  Polio disproportionately affects children under the age of five.

You may wonder why we should be concerned here in America about the resurgence of Polio out there in the rest of the world.  The reality is that these days – as far as disease is concerned – there are no borders.  A person exposed to Polio in Syria today – if they have not been previously immunized could be a unknowing carrier in Seattle tomorrow.  What makes matters worse is that in many of the more affluent pockets of America immunization rates for diseases such as Polio have fallen way below the target 90 percent level that is thought necessary to stop epidemics.

So why do parents not get their children immunized.  The reasons I heard in the above mentioned discussion are:

  • our children are healthy – and can therefore cope with diseases.
  • its better for a child’s immune systems to not be immunized.
  • there are risks associated with vaccines that outweigh the risks of the diseases.
  • there is a link between vaccines and autism.
  • there is a link between vaccines and autism for the next generation (i.e. we can pass on susceptibility to autism that we gained through vaccination to our children).
  • there is a distrust of western medicine and western doctors.

These views are not extreme.  Google “Vaccinations” and within a few hits you will see many of these same ideas being touted.  There is also a kernel of truth in some of these items.  Vaccines are not risk free.  According to the CDC the chance of a serious allergic reaction  to the MMR vaccine is about 1 in a million.  If you are the parent of that one in a million child then that does not feel like it is a rare occurrence.  If on the other hand your child does get measles there is a 15 percent chance of pneumonia, measles croup or convulsions.  Two unlucky children in every thousand will on average contract encephalitis, which in turn can lead to brain damage and death.  One incredibly unlucky child in every 100,000 may get subacute sclerosing panencephalitis which causes progressive brain damage and nearly always results in death.  Catching measles is many times more likely to cause death than being vaccinated – but it is true that vaccinations are not risk free.

On the other hand there is no truth to the myths that there are links between autism and vaccinations.  This myth derived from bad research – since disproven and withdrawn – but the myths persist.

The hardest argument to counter is that western medicine and doctors can not be trusted.  This is an area that we work on at NWABR.  People trust people who are honest, who acknowledge mistakes, who acknowledge that they do not know everything, and who continually strive to improve.  At NWABR we are working to both show all of the amazing gains that biomedical research has brought to the world and to also be as honest as we can about areas where things went wrong and where we need to do more work. We believe that there is no other way to rebuild trust – that has so clearly been lost.

I can’t persuade any person to change their mind about vaccinations.  But what I can do is really hear their concerns, attempt to distill some clarity from all of the opposing positions and provide data to support conclusions.   The parents that I was talking to will do what they will do.  Their children are healthy and for them the risks are  definitely at the low-end.  My only hope and wish is that if their children ever do become sick that they don’t then unwittingly become carriers of their disease.  Their children’s robust systems may well be able to cope but the record low levels of vaccinations do mean that many more people will get to share their disease, and some of those people will not do so well.

Regards

Ken Gordon

Executive Director

 

 

 

 

What does IBM’s Supercomputer mean for your genes?

What does IBM’s supercomputer Watson have to do with research? Stockpiles of genetic metadata combined with the advanced capabilities of supercomputers may be the key to specialized disease treatments at the individual level. Ethical issues, however, add layers of complexity to genetic testing and reporting. Should companies be allowed to conduct genetic testing to report health risks directly to consumers, or should this service be limited to tests ordered by physicians?

Bioinformatics is a multidisciplinary field aimed at processing and analyzing biological information. New bioinformatics methods may be a gateway to specialized disease treatments tailored to patients’ own genetic profiles. Ethical questions have come to the forefront of the debate as the collection of genetic data and bioinformatics processing requires the storage of large amounts of individual genetic data. As society continues to scrutinize the ethical implications, NWABR strives to educate and engage our community in dialogue around this issue and we want you to join the Conversation.

In NWABR’s Introductory Bioinformatics curriculum, NWABR covers ethical questions about genetic testing and the application of bioinformatics in the field. The curriculum explores how bioinformatics tools such as BLAST and Cn3D are used to investigate the genotypic and phenotypic consequences of a mutation to the Breast Cancer Susceptibility 1 (BRCA1) gene, which increases risk for breast and ovarian cancer. Ethical questions covered in the curriculum continue to pose challenges for researchers. As the costs of genetic testing decrease, ethical concerns about consumer privacy, impact on family members, test usefulness, access to genetic information and more will continue to arise.

Take, for example, IBM’s Watson computer. The British Broadcasting Company (BBC) recently highlighted the promise offered by the supercomputer to help fight common types of cancer. Data synthesis from Watson’s artificial intelligence platform is already being used to inform lung cancer treatment on an individual basis at the Memorial Sloan-Kettering Cancer Center in New York (BBC, 2013). Watson is capable of mining and decoding genetic information and identifying patterns in metadata in mere minutes — a process that would take researchers weeks or months—. This type of analysis requires large quantities of genetic data to ensure that correlations in gene sequences can be identified with enough statistical significance to lead to personalized treatments.

NWABR’s public outreach is also current. We recently presented a Community Conversation, “What Can Your Genes Tell You?,” that explored the ethical implications of Food and Drug Administration (FDA) regulation of direct to consumer genetic testing kits (Link 3). The Conversation centered on the private genetic testing company 23andMe, which offers consumers a Saliva Collection Kit and Personal Genome Service for $99. When consumers submit a sample, 23andMe creates a report utilizing metadata from scientific studies about single nucleotide polymorphisms (SNPs) and their association with health risk, genetic traits, drug response, and ancestry.

In 2013, the FDA ordered 23andMe to stop marketing and reporting health-related services because the company was not in compliance with the FDA rule for medical devices under the federal Food, Drug, and Cosmetic Act. Participants in the Community Conversation focused on privacy, trust, and control of data as well as the commercialization of DNA; the need for access to and assistance interpreting reports; resistance from members of the medical community in applying consumer-acquired data; and the lack of ethnic diversity in the 23andMe database.

There is no simple path forward when it comes to the generation, interpretation and application of genetic information. Medical professionals are able to use genetic data, synthesized by a supercomputer, to develop customized treatments for cancer patients. Regulations dictate how companies like 23andMe may use and report direct to consumer genetic data, which could reduce access to potentially valuable information. NWABR knows that engaging in dialogue around complex issues is imperative to identifying solutions and policy frameworks that work for all.

Regards,

 

Troy Chapman

Join the Discussion

NWABR wants to continue these Community Conversations, and has created a secure forum for your online dialogue. Start us off by sharing your thoughts. Here are a few questions to ponder: How can we manage the vast amounts of genetic data that are becoming available, and what can we do to protect privacy? What does genetic testing mean for sample donors, investigators, biorepositories and bioinformatics? What levels of clinical validity and transparency should be required when reporting disease risk, whether through tests ordered by a physician or by a consumer? What are the tradeoffs between FDA regulation and personal empowerment through access to genetic information?

To join the discussion email Troy Chapman at membership@nwabr.org.

For additional information follow the links below.

Resources

Community Conversation program page. http://www.nwabr.org/communityconversation

NWABR blog post on the Community Conversation by Ken Gordon, March 19, 2014. http://nwabr.wordpress.com

“FDA orders 23andMe to halt sales,” Nov. 26, 2013 (radio program). www.kqed.org

Genomics Law Report blog posts from Dec. 3, 2013. www.genomicslawreport.com

“Should the FDA stop you from scaring yourself with 23andMe’s DNA test?” Washington Post. http://www.washingtonpost.com/blogs/wonkblog/wp/2013/12/06/should-the-fda-stop-you-from-scaring-yourself-with-23andmes-dna-test/

The Spitoon, the 23andMe blog, posts from November and December 2013. http://blog.23andme.com  

Posted in All

Half of US adults 40 to 75 eligible for statins

A report in today’s Seattle Times suggests that cholesterol lowering statins will be in most of your futures.  Based on research from Duke University (which surveyed 4,000 people) it is now estimated that half of US adults between the ages of 40 to 75, and nearly all men over the age of 70 meet recently changed criteria for the use of statins. 

The guidelines for the use of statins were devised by the American Heart Association and the American College of Cardiology.  The Duke study estimates that half a million strokes and heart attacks over a ten year period could be prevented if the new guidelines were followed. 

There is some criticism of the new guidelines which favor the use of statins over other lifestyle changes (such as not smoking or working to reduce stress).

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