Minutes after giving birth, blood from the umbilical cord is collected and sent off to a central cord blood bank to be cryogenically frozen.  Years later this cord blood could be used to cure some cancers and treat rare diseases.

While to some this sounds like the stuff of science fiction,  the use of cord blood stem cells to treat disease is real and growing. Stem cells from cord blood can benefit both unrelated individuals who are a genetic match, or the cord blood donors themselves and their family.

Historically the only option for someone who wanted to save cord blood was to pay a fee to one of Canada’s nine private ‘family cord blood banks’. These private organizations facilitate the collection and storage of cord blood units for the exclusive use of the donor and immediate family.

Since September 2013 some Canadians have a second option which is to donate cord blood to the National Public Cord Blood Bank – a bank run by the Canadian Blood Services – where their cord blood is stored, entered into a public database, and is available for any appropriately matched patient at home or abroad, in need of a stem cell transplant. Once someone donates their cord blood to the public bank, they have no ownership over its use. If it is a match for someone else, they will not have access to it should they need it in the future.

While Canada now has a public and private option for banking cord blood, many gaps remain.

This article focuses on the questions Canadians are faced with about the practical and ethical issues associated with the choice to bank cord blood. For a brief description of what cord blood is and how it is collected, click here.

Canada’s public cord blood bank

“Canada hasn’t been pulling its weight” when it comes to cord blood banking according to Dr. Robert Klaassen, a pediatric hematologist oncologist at the Children’s Hospital of Eastern Ontario in Ottawa.

Klaassen says that prior to the opening of the first National Public Cord Blood Bank collection site in Ottawa, Canadians have mostly relied on stem cells from American, European or Australian bone marrow and cord blood banks, but have not been contributing to this international pool of nearly 18 million donors.

When an international stem cell match is found, provincial and territorial health systems pay a bill of $42,000 to procure the unit. Dr. Heidi Elmoazzen, Director of the National Public Cord Blood Bank says “it will be a big cost savings to our health care systems to rely less heavily on international [stem cell] sources.”

In 2012, there were 429 unrelated stem cell donor transplants in Canada. Of these, only 55 were from Canadian donors – the rest were from international sources.

The plans for the National Public Cord Blood Bank were announced in March 2011 with a mandate to increase Canadian capacity for cord blood collection, storage and research. Cord blood from the Canadian bank will also be available to the international community through a registry system.

With a total price tag of $48 million, the National Public Cord Blood Bank has a staggered plan for expansion to hospitals in four cities (Vancouver, Edmonton, Ottawa and Brampton) where cord blood can be collected. The rationale for selecting these sites, according to Elmoazzen is that they are in diverse communities, and are also located within reasonable proximity to two facilities in Ottawa and Edmonton that have the capacity to test and store cord blood.

In September 2013, the first public collection site opened in Ottawa, with women delivering at two Ottawa hospitals having the option to donate their cord blood to the public bank.

Although there are approximately 370,000 babies born each year in Canada, the National Public Cord Blood Bank has set a target to collect only 18,000 units over 6 years from the four sites. Elmoazzen says this figure was based on information from international cord blood banks and calculations for the ideal size of a bank, given Canada’s population and ethnic diversity.

Ethnic diversity is critical for the National Public Cord Blood Bank since Canadians from non-European backgrounds have a much lower chance of finding a match. Currently, most donors to international stem cell registries are predominantly of European background.

Armand Keating, a hematologist and chair of Cell Therapy and Transplantation at the University of Toronto notes that “stem cell transplant antigens tend to segregate along ethnic lines.”

While all Canadians will be able to access the National Public Cord Blood Bank, few will be able to contribute.

For those delivering in hospitals outside the four cities affiliated with the National Public Cord Blood Bank, private banks remain the sole option for banking their cord blood.

Private or ‘family banks’

There are nine private, or ‘family’ banks across Canada that facilitate the collection and storage of cord blood for the exclusive use of patients and their families. This comes at a cost. Most private banks charge about $1000 for the initial cord blood extraction and assessment, and about $100 per year for storage.

Clifford Librach, director of CReATe Cord Blood Bank in Toronto describes private banks as a form of “biological insurance”.

Monica La Vella, a Hamilton mother of two agrees. She says “the decision to bank cord blood was like taking out insurance for us.” La Vella notes that “we pay so much for insurance for our car and our home – why not pay for something that has the potential to save our children’s lives, and maybe even our own in the future.”

While there is only a 30% chance of stem cell matches from a sibling or related donor, Librach suggests that there are a growing number of disorders in which patients may benefit from cord blood stem cells that are re-transplanted to the same person, known as autologous transplantation.

However, he does concede that “the research needs to catch up with the banking of cells” when it comes to autologous transplantation. He notes that many of the potential uses for autologous stem cell transplantation – ranging from type 1 diabetes to cerebral palsy –  are still being tested in clinical trials.

For these reasons, the Society of Obstetricians and Gynecologists issued a clinical practice guideline in 2005 that did not recommend collection and storage of cord blood in family banks. The guidelines referenced data that only about 1 in 20,000 samples of umbilical cord blood have been used for autologous transplantation.

Tony Armson, head of the department of Obstetrics & Gynecology at Dalhousie University is the lead author of the SOGC guideline. He says that “a lot has changed since the guidelines were written in 2005 and that there are increasing opportunities for the use of cord blood.”

Armson notes that because of this, the SOGC guidelines are in the midst of being updated with a new section on the benefits and limitations of private cord blood banking. These guidelines will likely be released in 2014.

For now, the official position of the SOGC remains that banking cord blood privately is not recommended.

Making the decision about cord blood banking

Elmoazzen says that “it’s about providing families with education to ensure that they are making informed choices” when it comes to banking their cord blood.

However, in the next few years public cord blood donation will only be available at a fraction of Canadian hospitals. Given this, private banks will remain the primary option for those Canadians who wish to bank cord blood, and are able to pay the price.

Klaassen says that more should be done to build up the National Public Cord Blood Bank.

He says “There are hundreds of thousands of babies born every year and all those cords are being thrown away.”  He believes that there should be more cord blood units being banked, given the need for improving the diversity and number of cord blood units available to Canadians.

While establishing a national infrastructure to collect cord blood is an important first step, he suggests that “more support be put into this – the more cords are available, the more they’ll be used.”

While Klaassen advocates for more cord blood units to be collected, Keating suggests that a targeted approach to collecting samples from diverse populations will have more of an impact. He says that “the number of donors is meaningless if you are going to recapitulate the make up of existing registries.”