Three Parent DNA?

Good morning

Fascinating story on NPR this morning about a technique that allows the DNA of three parents to be combined to allow for a healthy child.  This technique is used when there are hereditary defects in mitochondrial DNA.  Essentially the fertilized DNA is stripped out of an embryo and inserted into a donor embryo with healthy mitochondrial DNA.  The hope is that this technique both can lead to a healthy child, and one which, in turn, does not pass on the mitochondrial DNA defects along their own genetic chain.

Daniel Horowitz for NPR

Image: Daniel Horowitz for NPR

This procedure is not currently legal in the US.  However, the British Parliament is currently considering changing legislation to allow this procedure.

Have a look at the amazing video of the transfer in process!!

Regards

Ken Gordon

Executive Director

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

 

Our Bioteh Future

Good morning all

In all of the election coverage over the last few days you may have missed this guest editorial in the Seattle Times from H. Stewart Parker.  Ms. Parker in this Op. Ed. charts the development of a number of key biotech firms and products here in the Northwest and talks about the diaspora of staff from Immunex the company that invented Enbrel, a breakthrough drug for the treatment of rheumatoid arthritis.

H. STEWART PARKER, MBA

H. Stewart Parker, MBA

Biomedical research and biotechnology combine to provide 34,200 direct jobs in WA state and a total of 92,400 total jobs once you count all of the ancillary support people (like me).  In total this sector makes up $11.4 Billion of the state’s GDP and provides $7.1 Billion in personal income.

Unfortunately even though this sector makes up the 5th largest sector in the state, with life science organizations in 74 cities – it often feels like the sector flies under the radar screen with people seeing the major economic drivers in WA and the NW as being IT and aeronautics.  Ms. Parker’s Op. Ed. reminds us all of the contribution of the sector – both in terms of economics and also in terms of the life saving changes being brought to us on a daily basis.

Talking about life saving changes – I had the pleasure of attending a fund raising luncheon hosted by the Benaroya Research Institute this last Friday.  They have a very simple mission – they want to cure 80 plus autoimmune diseases, like Type 1 diabetes, Crohn’s Disease and MS.  In one word BRI’s work is – inspiring.  Their new brand of “BRIng it on” is both fun and a challenge to us all to do better.

Have a great day.

Ken Gordon

Executive Director

 

Emergency Kit – be afraid, be very afraid

Dear all

This is National Preparedness month.  The Center for Disease Control (CDC) promotes October as a time when families should review their preparedness plans in the event of a disaster.  They publish a zombie survival guide which is a relatively light hearted way of thinking through what you need to survive if a disaster does strike.

The current Ebola virus has given the issue of emergency preparedness more visibility this month, and I noted in a blog a few weeks ago that we were going to update our own family emergency kit.

I am glad that we did as our kit was sorely, sorely out of date.  I put this kit together about eight years ago and many of the supplies and most of the food was out of date.  More embarrassingly I had obviously put the kit together in the summer expecting something akin to an extended summer camping trip – we had no real wet weather gear and nothing that would keep us warm in freezing conditions.

The clothes that we had stored for our then five year old daughter would have only been effective as rags – she has grown somewhat in the last eight years!!!

So we have gone through the kit, replaced the food, updated other emergency supplies, warm and wet weather gear.  We still need to store 65 gallons of water (the American Red Cross recommends 3 gallons per person per day), and we need to scrounge up things like spare eyeglasses, spare medications etc.

We ended up buying large 27 gallon storage totes from Lowes to store all of the stuff.  We now have seven of these containers packed to the gunnels with just the core items on the Red Cross and CDC recommended lists.  I thought that this would be a quick once over check off this gear and it has turned into a significant projects over three weekends.  We are also now left with the problem of where to keep all of the stuff.  It needs to be dry and safe and obviously accessible in the case of an emergency.

We are now better prepared, and we hope that we never ever have to depend on these kits.  Even at seven totes this is the bare minimum and it makes you realize how much we take our shelter, our warmth, our ability to cook and clean and stay safe for granted.

Regards

 

Ken Gordon

Executive Director

Emory University Hospital Commitment to Community

Good morning

There was an amazing story on NPR this morning about the preparation and commitment to infection control by the Emory Healthcare.  You can read and listen to the story here.  Their multi-year commitment to preparedness for infectious disease control, training of staff, preparation of facilities and of sharing their own best practices is amazing.

They have developed and keep updating an 84 page Ebola protocol.  For those who are interested this protocol can be downloaded here.

emory_customEbola patient Amber Vinson arrived by ambulance at Emory University Hospital on Oct. 15. Now healthy, Vinson was discharged from the hospital Tuesday (Kevin C. Cox/Getty Images).

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

Coffee!!!

Good afternoon coffee lovers

Coffee Mad Scientist

An article in today’s Seattle Times, cites research from one of NWABR’s members – the Fred Hutchinson Cancer Research Center – or as they are often known the “Fred Hutch”.

Apparently, the Hutch has proven a link between coffee intake and DNA. As a person who has some DNA floating around in my coffee circulatory system I definitely think that this must be the case. Coffee does not make me buzz, coffee does not keep me awake and I think my bladder would burst before my caffeine levels ever reached dangerously high levels.

Its good to know that my DNA has allowed the healthy consumption of such unhealthy quantities of this magic elixir.

Real cause to Thank Research.

Regards

Ken Gordon

Executive Director