Around the World With IDRI

Dear all

The Infectious Disease Research Institute (IDRI) is hosting an information evening on Thursday October the 16th about emerging diseases, such as Ebola and chikungunya and also age old diseases such as tuberculosis. As everyone now knows these diseases can so quickly span the globe. This discussion will focus on the rapidity of the spread and what we as individuals, families and communities can do to stop this.

This is a hot topic at the moment and I have shared news of this event with my friends and family because I think it is important that we know about this.

In the developed world there is a belief that because we have access to the most amazing medical facilities that such diseases are not so dangerous. Nothing could be further from the truth. A few thousand highly contagious individuals would have the ability to rapidly overwhelm our medical facilities. Even if we had this number of infectious control beds available – this number of incredibly sick people will mean that medical, nursing and other care professionals will be pulled away from their normal day to day work. I may not be a direct victim of Ebola – but if my heart condition cannot be treated – I could easily become an indirect victim of Ebola.

We therefore cannot rely on the traditional health services during such times. A major epidemic is similar to an earthquake in that the message has to be that individuals and families have to be able to look after themselves until such time as authorities can catch up. It is worth using this time when we are not in an epidemic to look at household preparedness.  At the end of this blog I have included a list of items from the American Red Cross that each family should have to help them survive the aftermath of a disaster.

When it comes to epidemics there are a number of other key precautions.  These include minimizing the spread of disease by staying home, and really watching hygiene when someone is sick.  Wash hands, watch for droplet infection, sanitize surfaces and items used by a person that is sick.  Seek medical attention, but call your medical facilities before arriving – some diseases such as measles can remain present floating in the air for several hours after a contagious person has been in a room.  Your medical facilities can help make arrangements to keep all their patients safe.

If, and I fervently hope this does not happen, a disease such as Ebola does take hold in the developed world – then the best defense is to not get the disease.  Everything that we can do to minimize cross infections will become increasingly important and having access to an emergency kit like the one listed below will be a vital part of helping people to stay safe.

This is the suggested items from the American Red Cross that each family should have prepared in case of a disaster:

Water—one gallon per person, per day (3-day supply for evacuation, 2-week supply for home)
Food—non-perishable, easy-to-prepare items (3-day supply for evacuation, 2-week supply for home)
Flashlight
Battery-powered or hand-crank radio (NOAA Weather Radio, if possible)
Extra batteries
First aid kit – Anatomy of a First Aid Kit
Medications (7-day supply) and medical items
Multi-purpose tool
Sanitation and personal hygiene items
Copies of personal documents (medication list and pertinent medical information, proof of address, deed/lease to home, passports, birth certificates, insurance policies)
Cell phone with chargers
Family and emergency contact information
Extra cash
Emergency blanket
Map(s) of the area
Medical supplies (hearing aids with extra batteries, glasses, contact lenses, syringes, etc)
Baby supplies (bottles, formula, baby food, diapers)
Games and activities for children
Pet supplies (collar, leash, ID, food, carrier, bowl)
Two-way radios
Extra set of car keys and house keys
Manual can opener
Whistle
N95 or surgical masks
Matches
Rain gear
Towels
Work gloves
Tools/supplies for securing your home
Extra clothing, hat and sturdy shoes
Plastic sheeting
Duct tape
Scissors
Household liquid bleach
Entertainment items
Blankets or sleeping bags

Just by the way – I do have one of these kits – but it is out of date.  This will be one of my own tasks this coming weekend ….

Regards

 

Ken Gordon

Executive Director

 

Science and the Human Heart

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

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

Introducing our panelists

Moderator Gretchen Sorensen introduces our panelists:

Kelly Edwards, PhD is Associate Professor, Department of Bioethics and Humanities at the University of Washington School of Medicine. Edwards is core faculty for the Institute for Public Health Genetics and the Critical Medical Humanities Research Cluster. For more, see her bio in the Department of Bioethics and Humanities.

Edwards describes the questions she helps others consider in her work as a bioethics consultant, often regarding biorepositories. Questions are sometimes  about recruitment and communications to potential recruits, such as “How should we handle consent?” Other questions surround data access, i.e. who has or should have access to data from the repository?

Shannon Sewards is Assistant Director for Operations, Human Subjects Division at the University of Washington. “What is ‘the human subjects division’ all about?” muses Sorensen, noting the intriguing name, before answering simply that it’s “anything that involves research on a person.” For further clarification we offer the following, from the division’s home page:

“Research involving human subjects must be reviewed and approved by an Institutional Review Board (IRB). At the UW, several IRB committees serve this function. The Human Subjects Division (HSD) provides administrative support and facilitates IRB review; assisting researchers throughout the process.”

Sewards describes that the role of IRBs is to be protective for the general public, while they can be a hindrance, relatively speaking for researchers.

Donna Russell, MHA is Director of Research Development and GAPPS at Seattle Children’s. GAPPS is the Global Alliance to Prevent Prematurity and Stillbirth, whose expanded mission includes maternal, newborn, and child health with a global scope.

Russell notes that GAPPS began because of the magnitude of the problem of pre-term birth, here in the U.S. and globally. 13 million pre-term births happen annually around the world, and 1 million of those are fatal. There are also 3 million still births.

That means there are more than ten times the number of still births as there are “SIDS” deaths. SIDS is relatively well publicized while still birth is not.

We still, fundamentally do not know what causes many of these deaths. The best strategy for solving the mystery is to link high quality specimens to descriptive data.

Therefore a cornerstone of GAPPS is their biorepository. They just started collecting data in the last year, after two years of preparation and addressing many of the issues we will discuss today.

A fundamental ethical question for GAPPS is that pregnant woman are a vulnerable population.

Edwards, Russell, and Sewards are introduced by Sorensen

From reactive to proactive health

Our moderator is Gretchen Sorensen of Sorensen Ideas. Sorensen opens with a brief introduction: “There’s a revolution going on right now in biology and medicine, and Seattle is at the forefront of it,” citing examples not only in global health but in biomedicine generally.

The revolution is a shift from reactive to proactive in health and biomedical research. We are looking at genetics, the environment, and interactions between them and changing medicine for the future. Medicine is becoming more personal with increased understanding and accessibility of genomics. Patients and consumers are playing a key role, participating more in determining their own medical future.

“Biobanks are more than libraries of flesh,” Sorensen declared, in response to some popular media descriptions of repositories. (CityClub blogger Sara Neppl clarified that Sorensen was quoting this Wired magazine article from June 2010 that referred to biobanks as “libraries of flesh.”)

Biobanks combine biological specimens of organs, blood, and so on with data about health and lifestyle. Combining all of this is very powerful but also requires that we proactively and comprehensively address issues of public trust and ethics in research. Today’s panel discussion is one more step in that effort.

Moderator Gretchen Sorensen introduces our topic: