Engaging perinatal donors
Breast milk & umbilical cord donor projects
Human breast milk and umbilical cord blood donations rely solely on donors in the perinatal period of life. During our Week of Talks, Dr Maryanne Perrin, Bruna Gutierrez dos Santos, and Dr Jennie Haw showcased their research on human breast milk and umbilical cord blood donation.
Current evidence on selling, sharing, and donating
Dr Maryanne Perrin
Today’s human milk market is complex and different from markets for other tissues. Breastfeeding parents can decide where they would like to donate their milk, and often choose to do so in one of three ways:
- milk banks (donor)- if they meet specific criteria, they are able to donate their milk to a non-profit milk bank;
- families seeking milk (sharer)– they can connect directly with families that are seeking milk, and with the introduction of the internet- they are able to now connect with people far beyond their traditional geographic community, and;
- for profit milk banks (seller)- they have the option of selling their milk to commercial entities that are making products from human milk.
In their talk, Maryanne Perrin and doctoral student Bruna Gutierrez dos Santos discuss what the literature says about sellers, sharers and donors of milk. They also discuss the complexity of the milk market, and the results of their latest systematic review on milk donors.
To view Maryanne’s and Bruna’s talk for free, please click the video below:
“I’m part of a larger community helping each other out”: a qualitative analysis of women’s reasons for and meanings of donating cord blood to Canada’s national public cord blood bank
Dr Jennie Haw
Cord blood is the blood remaining in the umbilical cord and placenta after a person gives birth. If the cord blood is clamped immediately or soon after giving birth, the remaining blood can be collected, processed and frozen for future clinical use. This blood is rich in blood stem cells and is used to treat over 80 diseases and disorders, including leukemia, lymphoma, sickle cell anemia, as well as other inherited immune system and metabolic disorders.
In her talk, Jennie discusses the background on umbilical blood cord donations and the national cord bank in Canada, and provides an overview of the social science literature on cord blood banking, including the literature on why people donate or would donate cord blood and the gaps in this literature. She also presents the findings of her recent qualitative analysis of the meaning of cord blood donations for people in the perinatal period who donated or wanted to donate.
To view Jennie’s talk for free, please click the video below:
Q & As
The DoRN Week of Talks provided a unique opportunity to engage in an easy and convenient Q & A with presenters. Below we have listed the questions that we received for Maryanne, Bruna and Jennie, along with their answers.
Q&A- Dr Maryanne Perrin & Bruna Gutierrez dos Santos
Most of our understanding of human milk composition is based on relatively small studies using outdated analytical techniques. So, there is a great need to understand the composition of human milk across a variety of well-nourished mothers. This research is under way through support of the Gates Foundation and some preliminary analysis was presented by Dr. Lindsay Allen, the Principal Investigator, at the recent ISRHML conference. More specifically to DONOR human milk, there are important gaps in the literature related to the milk (e.g. how various milk banking processes impact milk composition); the recipients (e.g. do infants with Neonatal Abstinence Syndrome have improved outcomes when fed donor human milk vs infant formula); and the donors (what are the primary motivations and barriers to donation).
Given the findings of your systematic review, what advice would you give to encourage women to donate to milk banks?
Individuals who donate to milk banks reported several reasons/enablers for donating including altruism, having surplus milk, and wanting to avoid wasting milk. There is overlap with the motivators identified in our systematic review and the motivators reported by individuals who participate in peer-to-peer milk sharing. Less is known about the barriers that make milk bank donation difficult. Identifying and lowering these barriers is an important thing that milk banks can do to encourage donation.
Q&A- Dr Jennie Haw
For those with access, and who don't donate to private banks, what are the key barriers to donating to public cord blood banks?
For this study, we didn’t interview the population of women who have access to but chose not to donate to the public bank. We tried to recruit women who considered donating to the public bank and chose not to donate, but we weren’t able to recruit any women who fell in this category. Only 3 participants did not donate and this was because of access obstacles (e.g., were not giving birth at a hospital that collects cord blood). Given that this study was focused on the public bank, we also didn’t interview women who had access to bank at a private bank and decided not to bank. Studies that examine these populations would be very insightful.
The idea of donating to contribute to science has come up in a couple of talks in relation to cord blood and also faecal microbiota. Do you think this is a motive that could be emphasised more in more mundane types of donation such as blood and plasma, where research still continues (but donors may not be aware)?
That’s an interesting idea and one that would be interesting to explore. I think one significant difference between cord blood/faecal microbiota and blood/plasma is that the former human biological materials are associated with promissory sciences (e.g., hope and hype of stem cells and human microbiota) and part of the social and scientific imagery that supports the donation of these materials is not only helping others in the present but future potential for these materials to lead to breakthroughs in science. As far as I know, this is not the case for blood and plasma. Neither is associated with new emerging sciences and the social imagery of blood and plasma is very much focused on clinical use. It would be interesting to examine if contributing blood and plasma to scientific research would be a motivator to donation and whether the type of scientific research – e.g., new promissory research for a new cure versus less “exciting”, “ground breaking” type studies – might make a difference.
What further research needs to be conducted on cord blood or the relationships between donors and the health-care systems?
There are many areas for further research regarding cord blood, donors and healthcare systems. One area that’s under-researched in Canada is cord blood donation by different communities of racialized donors to better understand donation from their perspectives. Second, social determinants of cord blood donation and how social factors, such as social capital, may influence whether women donate cord blood. Third, given that cord blood collection occurs in hospital in Canada, examining the perspectives of healthcare staff who assist in the recruitment and collection processes would contribute to improving these processes. Lastly, I think the question posed in Q1 raises an important area for further research – what are the barriers or reasons why women who consider donating cord blood decide not to?
How did you decide to use process evaluation for this project and did you find this to be a useful approach?
We chose to conduct a process evaluation to assess how the cord blood program was doing after a few years of implementation. A process evaluation views a process as a social activity made up of various social actors and begins from an understanding that how a process is intended to occur, in theory, is often not how it happens in practice. While the cord blood bank had been in operation for a few years, recruitment of cord blood donors continued to be a challenge so we focused our process evaluation on in-hospital donor recruitment and collection. For the full project, I interviewed managers of the cord blood bank, frontline staff, and women who donated or tried to donate cord blood. I found it to be a really useful approach and we able to identify what was working well and where there were some gaps in the process. For example, we identified some gaps in follow up with women who had registered to have their cord blood collected, but were uncertain if it had been collected and/or banked. Knowing this, the cord blood bank improved their follow up with women who had registered. Interestingly, through the interviews, we also learned that labour and delivery nurses are key social actors in the process and recommended additional research to better understand their role in the process.
I'm curious to know how you decided on the number of interviews to conduct? It seems like a lot of data to me but I'd be interested to know if you felt this was the right amount or not. I noticed that you didn't mention reaching 'saturation'.
I started out with the aim to interview 40 women who had donated or tried to donate cord blood (based on general conventions in qualitative research that indicates 20-30 “information rich” participants often provides sufficient data to reach saturation). However, most women who register to have their cord blood collected don’t have a bankable unit (i.e., cord blood collections must meet minimum standards to be banked) so they will only have completed the first stage of consent; that is, completed the registration to donate. Only those women who have a bankable unit are asked to complete the second stage of consent in order for their cord blood unit to be banked (the cord blood bank in Canada has a two-stage model of consent). It is the second stage of consent that requires women to complete a maternal health questionnaire, provide a blood sample, etc. For most women this is completed before they leave the hospital, so for many within the first 24-48 hours of giving birth. Because most women don’t have a bankable unit, I found that with the first round of recruitment and interviews the vast majority of participants had only completed the first stage of consent. Given that women who have a bankable unit must participate in completing the second stage of consent (i.e., an additional part of the donation process), we felt it was important to ensure we hear from a sufficient number of these women as well. So we modified recruitment to over recruit women who had completed the second stage of consent and we went from an initial aim of 40 participants to 76.