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Public or Private Cord Blood Banking – an important decision.

Posted in medical with tags , , , , , , , , , , , , , , , , , , , , , , on February 23, 2013 by Lance Strzok

Public or Private Cord Blood Banking – an important decision. Feb 2013
baby
We started taking birthing classes with our hospital about half way through our pregnancy. In several of our classes questions on the topic of cord blood banking came up. It was clear that there were several things we needed to understand to make an informed decision; primarily ethical, religious, financial, and medical.

A key understanding is that there are different kinds of stem cells. The focus of this article is about cord blood stem cells. Although there is controversy on the topic of embryonic stem cell research, there is little controversy over cord blood stem cells and cord blood banking, as the cord and its blood are part of our bodies, and taking the stem cells from the cord that would otherwise be discarded after birth in no way harms the baby or mother.

With regard to religion, there are several that take issue with embryonic stem cell research, but few if any that oppose cord blood stem cell research. (Bishops). This finding answered our question on where our faith stood, and a visit with your religious leader or a search on your religion and its position on the various types of stem cell research should answer any questions you have.

Current research with cord blood stem cells show promise in the treatment of: AIDS, Alzheimer’s Disease, Diabetes, Heart Disease, Liver Disease, Muscular Dystrophy, Parkinson’s Disease, Spinal Cord Injury, and Stroke.

Diseases that have already been treated with cord blood stem cells include: Acute Lymphoblastic Leukemia, Acute Myelogenous Leukemia, Acute Promyelocytic Leukemia, Adrenoleukodystrophy, Alpha Mannosidosis, alpha-Thalassemia HbH constant spring, Amegakaryocy, Anaplastic Lymphoma, Aplasia, Aplastic Anemia, Biphenotypic Leukemia, Burkitt’s Lymphoma, Chediak-Higashi Syndrome, Chronic Granulomatous Disease, Chronic Lymphocytic Leukemia, Chronic Myelogenous Leukemia, Congenital Neutropenia, Di¬use Large B-Cell Lymphoma, Dyskeratosis Congenita, Familial Lymphohistiocytosis, Fanconi Anemia, Hemophagocytic Lymphohistiocytosis, Histiocytosis, Hodgkin’s Disease, Hunter’s Syndrome, Hurler’s Syndrome, Hyper IgM Syndrome, I Cell Disease (Leroy Disease), Juvenile Myeloid Leukemia, Juvenile Myelomonocytic Leukemia, Kostmann Syndrome, Krabbe Disease, Langerhans Cell Histiocytosis, Leukodystrophy, Mantle Cell Lymphoma, Mycosis Fungoides, Myelodysplastic Disorder, Myelofibrosis, Neuroblastoma, Niemann-Pick Disease, Non-Hodgkins Lymphoma, Osteopetrosis, Plasmocyte Leukemia, Polycythemia Vera, Refractory Anemia, Sandhoff Disease, Scleroderma, Severe Combined Immune Deficiency (SCID), Sickle Cell Disease, T-Cell Immunodeficiency, Thalassemia, and Wiskott Aldrich Syndrome. Additional changes to the list above and updates can be viewed at the source listed here: http://www.stemcyte.com/scf-diseases-treated

Considering the value and potential of cord blood stem cell research and goals, it became clear that of the three options; 1) discard the umbilical cord blood, 2) private cord blood banking, 3) public cord blood banking, we would want the cord blood used for something rather than be discarded. Now we were down to public or private cord blood banking. The remaining questions were; what were the differences between the two in terms of access to it for personal use, and, the difference in cost?

The primary differences between public and private cord blood banking are access and cost. With public cord blood banking you don’t pay for anything, but there is no guarantee that your cord blood will be available to you if you need it in the future. Your cord blood stem cells are listed in a national registry, and if there is a patient being treated and the cord blood you donated is a good match, it may be used to treat that person. However, if you come down with a treatable illness and your cord blood has not been used, it is still available to you to use to treat your illness.

With private cord blood banking, you pay a fee to guarantee access to your sample of cord blood if you or a family member is diagnosed with a disease that is treatable with your cord blood, you have access to it.
Deciding between public or private cord blood banking should include a look at both parents family medical histories to determine if there are any diseases that are prevalent in your family. Then compare any diseases you find with those that are treatable with cord blood cells. This should give you a strong indication of the likelihood of needing access to your specific sample in the future, and help you decide whether the risk is worth the cost.

As of Feb, 2010, a public cord blood donation is free, while a donation to a private company is roughly $1,500.00 with an additional annual frozen storage maintenance fee of $75.00 per year.

Additional considerations include;

1) Make this decision and contact the group you would like to donate to by the 30th week of your pregnancy because you need to have a kit sent to your house and fill out some paperwork with regard to your background. This is especially true if you want to do a public cord blood banking because there are more questions about family history of disease that need to be understood in order to have your cord blood listed in the national registry. Beyond 30 weeks you really only have the private cord blood option.

2) For public cord blood banking, the hospital will have to take more blood samples at birth in order to list your blood in the national registry whereas there may only be one blood sample taken for a private banking.

3) As for the cord blood extraction itself, the doctors explained that there was little difference in what they were asked to do.

4) With public cord blood banking, after the baby is born you (or someone you designate) will be responsible for shipping the sample back to the research institution in a timely manner using a prepaid container that is sent to you. With private cord blood banking, there may be someone that picks up the sample after birth and ships it to the storage facility. In our case, it was a Federal Express prepaid sticker on a red sample storage container that we took to a local Federal Express office that was suited to accept these shipments. Further conversations with Federal Express personnel indicated that a truck goes to our hospital every day except Sunday, and that those packages can be put on those trucks. So check with your hospital beforehand, it might save you from having to leave your new bundle of joy for a while to deliver the sample.

After taking into consideration the risks, costs, and benefit to society, our decision was to donate our cord blood to a public cord blood bank. We found lists of public and private cord blood banking locations, and ultimately chose to use the Carolinas Cord Blood Bank – http://www.cancer.duke.edu/ccbb/contribute.asp to give our cord blood donation to.

In closing, we hope to raise awareness of these two options, and would like to encourage all couples to choose either private or public cord banking over discarding the cord blood. Please share this information with family and friends to help raise awareness of this choice. There is simply a lot of good that it can be used for in developing and treating illness, now and in the future.

References.

Cord Blood – Wikipedia 15 Feb 2013, http://en.wikipedia.org/wiki/Cord_blood

Stem Cell – Wikipedia 15 Feb 2013, http://en.wikipedia.org/wiki/Stem_cell

Carolinas Cord Blood Bank http://www.cancer.duke.edu/ccbb/contribute.asp

Bishops, United States Conference of Catholic. Catholic Support for Ethically Acceptable Stem Cell Research. 9 February 2013. 9 February 2013.

More information can be found:

Carolinas Cord Blood Bank http://www.cancer.duke.edu/ccbb/contribute.asp

Additional articles http://www.cancer.duke.edu/ccbb/articles.asp

Cord blood stem cells http://en.wikipedia.org/wiki/Cord_blood

We can do better.

Posted in Web2.0 Productivity with tags , , , , , , , , on June 8, 2010 by Lance Strzok

No matter who you put in the DNI office, they have to be willing to address the changes that have to take place within agencies and analysts. The DNI has to be empowered to directly impact the budget of the agencies that he is trying to get to work together. Otherwise you can fire all the people you put in that seat and it won’t make a bit of difference. The public has to demand more from our leadership, and from our intelligence agencies.

To say I am disappointed would be an understatement. I am frankly disturbed with the current demonstrated lack of desire (not ability) for government agencies to truly collaborate on articles and issues regarding our national interests.

Family, friends, and fellow taxpayers deserve better from the Intelligence Community (IC) and government agencies that are sworn to guide and protect our great nation. Taxpayers pay taxes every year with the idea that the money they give to the government will be spent on programs that have well defined requirements, have little waste, and are realistic in scope and timeliness.

Watching the news we see glimpses of failures to recognize key information that was available across the various government agencies or agency databases that may have allowed a given atrocity to have been avoided. This followed by finger pointing and general denial of responsibility when something happens. I see databases at individual agencies that are created using government funds and then treated like they somehow belong to that agency. Rather then storing that information centrally where it can be searched, mashed, and relationships can be formed, they sit on servers within disparate agencies with the hope that access to those data can be logged and metrics can be made on how useful that database or information is so that a business case for its continued use can be justified. This of course inherently reduces its usefulness and timeliness and the ability for computer systems (that don’t sleep) to find relationships in mountains of data. Do agencies own their databases? Or did taxpayer dollars pay for them with the idea that they would be shared and used by all in an effort to protect our nation?

So put those mountains of data, (databases) in a central location where computers can apply artificial intelligence and pattern recognition on all of that data simultaneously and alert analysts to relationships that are found or that may exist with flags that denote a need for a given analyst to be granted access in order to find out the details of that relationship.

By moving the data into a shared environment, we can allow computers to find relationships and share those relationships and relevancy with the analysts that are interested in that information. We won’t have to rely on humans to detect it, and share it. You see, the sharing part of this is where I believe we are coming up short.

So why is it that sharing is so difficult within these communities? Well there are several reasons.

Policies – that state which organizations can share what with others, and also define the protection of databases and information.

History – of keeping secrets in the case of of the intelligence community. A long history of doing our best to keep secrets and protect databases of information under terms like “national security”, or “need to know”. These ideas served us well, but are they actually working? I would argue that they are not as effective as we may imagine, and that we may want to start to outpace our adversaries rather then spend so much time and effort trying to protect every bit of information so zealously. That is an entire debate that deserves another post all together.

Culture – where the people that know information seem to have more value and bring more value to an organization. Knowledge is power, and your pay is based on what you know and what you bring to the table. Rather then what you know and how you share it in ways that others can benefit from it. This continues to be a problem, fueled with a pay for performance system that (if done incorrectly) could lead to ever tighter lips when it comes to sharing.

In short, we will have to address the policies, historical vs current sharing ideology, and the culture of perceived value in knowledge sharing vs knowledge hording and the value that either idea brings to an organization.

Once we have the culture of appropriate sharing, shared situational awareness on items of interest within a community of interest, and technology supporting the sharing the awareness across unified data stores then we may see a more realistic environment for stopping future attempts at causing the US harm.

Another area ripe for improvement is where do we write about the things we know and understand?

Currently, each agency has its own process for vetting and releasing reports or products that get some sort of seal of approval (which just means it completed a vetting process that can be as shallow as one person deep). They also each have a production group, or division of folks that move these products through a process, then publish them to some server (again, may or may not be seachable or indexed). By the time the information has gone through the process, the information may be a little old, or been overcome by events. This group and process is intended to bring a sense of authority to the documents, and once the document or information has the command seal added, it is available to the rest of the consumers to apply to their problem set. These reports are now something that can be referenced and in some cases, only these documents can be used or referenced for making decisions with regard to acquisition. This is another area where we need to take a good look at policy and see if there is room for a joint product, not just agency products that can get a seal of approval.

The idea that the smartest people on any given topic exist in one building is just not realistic. acquisition communities should be able to find joint products that reflect what communities of interest have to say about the topic at hand. They should not have to be bound to one agencies opinion, but able to use the opinion of the members across the community that work that issue. Simply put, if I offered you a report by one agency that has 4 people that looked it over and contributed to it, and one that an entire community worked on collaboratively to create, which one would you choose?

So the question always comes up on the vetting process for these collaborative documents. What rigor is there? What process? How can the consumer know that a given product has any more or fewer errors then a product created by a single agency and put through their process? Put another way, how can we know that a product that had 15 contributors from across the community and was read by many more as it was being created is any more accurate for making decisions then one that is created by 4 people at a single agency that goes through that agencies process?

Bottom line, we need to demand that our Intelligence Community act more like a community than a group of competing agencies, and empower those that are trying to change the culture of collaboration and analysis from agency specific to that of one IC supporting decision makers. Not 16 agencies trying to tell their own version of the story. Huge change has to take place, and it won’t happen unless the public is demanding it. Otherwise, no matter who you put in the DNI’s chair, it won’t matter because the agencies can just wait him or her out and go on with business as usual. So empower the DNI to directly impact budgets, and force documentation of actual collaboration and proven steps of change with embedded liaisons. Make intelligence production occur in a collaborative space that is open to all of the people that work that issue and have the appropriate credentials to work with that information at the lowest level possible. Take production down to the analysts level, and have it created and published in an open, accessible, collaborative forum. Build communities of interest, foster and reward superior contributions and products that have the touch of many hands and minds.

These are real, and achievable steps that we can take to move us toward a more focused and efficient Intelligence apparatus.

Constructive comments always appreciated.