Why Is Human Milk Donation Absent From the Literature on Philanthropic Giving? The Invisible Female Donor and Her Invisible Gift

Abstract

In this research note, we call attention to human milk donation being essentially omitted from the philanthropy literature and bodily gifting research. We focus here on human milk donations for infant feeding through nonprofit milk banks. We argue that its omission is due to two main factors: (a) the incoherence of defining human milk donation and the challenges to its regulation and (b) its consideration as care work and the characteristics of the milk donor identity. We end with avenues for future research in this area.

Keywords

human milk donation female philanthropy donor identity bodily gifting human milk banks

Introduction

Women have shared their human milk (HM) from the dawn of humanity. They have nursed other babies in addition to their own, through cross-nursing (also known as co-feeding or allomaternal nursing; Hewlett & Winn, 2014) or through wet-nursing, either for payment or while being enslaved (Thorley, 2008). HM sharing among peers is prevalent today throughout the world via online platforms (e.g., milk sharing websites and Facebook groups), whereby mothers can choose to share their HM (Reyes-Foster et al., 2015, 2017). For the last 100 years, women can also sell their milk to for-profit milk banks, or donate their milk to nonprofit milk banks (Cassidy, 2012; Cassidy & Dykes, 2019; Cassidy et al., 2018; Doshmangir et al., 2019). Very little attention has been given in the philanthropic literature about the phenomenon of milk sharing, with particularly little attention to the donation of milk to nonprofit milk banks. This is despite their rapid growth, with more than 600 nonprofit HM banks around the world. This will be our focus in the present research note.

When choosing to donate milk to nonprofit milk banks, women are required to undergo significant efforts. Expressing milk is often uncomfortable and even painful at first. Women often suffer from engorgement and other physical hardships (e.g., sore nipples, uncomfortable milk leaks). The process of extracting milk is time-consuming and requires strict cleaning and hygiene regimes (Carroll, 2015). Other required practices include being mindful of one’s diet, abstaining from certain medications, caffeine, and alcohol, undergoing screening procedures (by phone or mail) and undergoing blood tests prior to becoming donors.

Milk banks collect, pasteurize, store, and distribute the HM that is donated. Brazil has the world’s largest network of HM banks, with more than 220 that provided milk to 170,000 neonates in 2015 (Palmquist et al., 2019). Milk banks operate in numerous countries on the African continent, as well as in countries ranging from India to New Zealand and Australia (Bharadva et al., 2014; PATH, 2013). There are 28 banks in North America and 226 banks in Europe, including the first banks in Estonia, Lithuania, Poland, Portugal, Russia (Weaver et al., 2019), and most recently in Israel.

Although the phenomenon of human milk donation (HMD) is of great societal importance, and it has accordingly been explored extensively in the fields of women’s studies, neonatal medicine, nursing, lactation, nutrition, sociology, and anthropology (Cassidy & Dykes, 2019; Kent et al., 2019; Palmquist et al., 2019), it is virtually ignored in the philanthropy literature. For example, in two key reviews on motivations for charitable giving (Bekkers & Wiepking, 2011; Bennett, 2003), ample research on the donation of blood is included, whereas research on milk donation is absent. This omission was recognized more than a decade ago (Pimenteira Thomaz et al., 2008; Shaw & Bartlett, 2010), and recently acknowledged yet again (Doshmangir et al., 2019), yet its omission remains making it practically an invisible philanthropic act. This is particularly surprising given the high demand and need for HM along with the increasing number of nonprofit milk banks globally (Cassidy & Dykes, 2019).

We propose that the lack of attention to HMD in the literature on philanthropy is a result of, at least in part, of the significant inconsistencies in how HM has been defined and how its sharing has been regulated. In addition, and perhaps more importantly, we argue that HMD is viewed as a female-maternal act of care work (Carroll, 2015; Dickenson, 2001) and of maternal-generosity (Cassidy, 2012) rather than an act of female philanthropy. It is the characteristics of the milk donor identity that help to further explain why HMD is prone to omission in the literature on philanthropy. Indeed, we contend that HMD falls outside of what has become the norm: “white, heterosexual male discourse for philanthropic giving” (Drezner & Garvey, 2016).

We begin by briefly reviewing the literature on bodily gifting. We then elaborate on the inconsistencies in the definition and regulation of HMD. We proceed by describing HMD as care work and outline unique characteristics of milk donors’ identity. These considerations, as we argue, contribute to HMD not being treated as an act of philanthropy. We conclude by proposing directions for future research on female philanthropy, female bodily gifting in general, and HMD in particular.

Bodily Gifting

In the field of philanthropic studies, where gifts and giving are at its heart, the term “bodily gifting” (Shaw, 2003, 2008, 2015; Shaw & Morgan, 2017; Titmuss, 1970) is often used to reference donations from one’s body as a gift, drawing on Mauss’ research about the meanings of gifts (Mauss, 1954). “Bodily gifts” are termed by public health scholars as “substances of human origin” (SoHO) “which are derived wholly or in part from the human body and intended for clinical application” (Noël & Martin, 2015, p. 1). These can include living donations of organs or parts of organs such as the lung, liver, kidneys, and tissue such as ovarian eggs, skin, bone, bone marrow, and umbilical cord blood, and fluids like blood, including white and red blood cells, platelets and sperm, among others.

Studies on bodily gifting have to some extent given attention to donor demographics and at times to gender differences specifically. When it comes to organ donation, for example, women are more likely to donate organs and less likely to receive them in comparison to men (Kent et al., 2019; Legato, 2004; Puoti et al., 2016; Steinman, 2006). In the context of blood donation, differences are found in the motivations of men and women to donate. A review of 28 studies of blood donation indicated that men were more likely than women to be motivated by monetary incentives (e.g., through various prizes) and by the option to receive free health examinations, whereas women were more likely driven by altruistic reasons (Carver et al., 2018). In a comparison of ovarian egg agencies and sperm banks, both of which provide financial compensation in return for gametes, ovarian egg donations are described as a “gift,” whereas sperm donations are described and framed as a “job” (Almeling, 2009). This latter comparison highlights some of the gender stereotypes and asymmetries that exist with respect to bodily gifts.

Beyond gender, differences also exist among the various types of bodily fluid and tissue donations (e.g., HM, blood, sperm, ovarian eggs) across several dimensions. Comparing briefly HM to other types across dimensions allows for further context about HMD, and these can include the following:

The extent to which the donation is essential and lifesaving. Blood, for example, is an essential lifesaving donation (Learoyd, 2012), whereas sperm is not. With respect to HM, although its importance to infants’ health has been repeatedly highlighted (e.g., as in statements by the American Academy of Pediatrics Gartner et al., 2005 and the World Health Organization [WHO], 2003), it is nevertheless lifesaving for only a very small subset of infants. For the large majority of them, life can proceed uninterrupted without HM. Accordingly, HM substitutes have been used throughout history (e.g., such as goat or cow milk in the past and formula today).

The technology involved in the donation process. The extraction of HM is relatively simple, whereas other female-specific bodily gifts, for example, ovarian eggs donation, require invasive medical intervention.

The need to bank fluids and tissues. Blood and ovarian eggs must be banked in the donation process, rather other fluids or tissues such as sperm or HM can be donated directly to the recipient. Both blood and milk donations, however, can potentially contain viruses, or be affected by drugs. As such, their donation to nonprofit banks entails testing and handling before they can be safely donated (Carter & Reyes-Foster, 2016).

The degree to which the fluid and tissue can be renewed. Blood and sperm, for example, are renewable and can thus be donated repeatedly, whereas ovarian eggs are limited, and HM is produced only in temporal proximity to mothers’ pregnancy and giving birth.

The monetary compensation and taxation. In the United States, sperm and ovarian eggs are most typically sold, whereas in other jurisdictions, such as in the UK and Australia, they are donated without compensation. In general, where sold, the amount of compensation for sperm donation is significantly lower than that for ovarian egg donations [Almeling, 2009]. HM can be either sold (e.g., online or to for-profit milk banks) or given voluntarily, and whole blood, in most countries, cannot be sold, but rather only its components (e.g., plasma) are sold. The World Health Organization, the International Federation of the Red Cross, and Red Crescent Societies declared their commitment to achieving 100% voluntary whole blood donation around the world, through national blood programs and national blood transfusion services (WHO, 2010). This particular emphasis on the voluntary donation of blood may have to do with the generally lower physical and psychological costs involved in its donation versus those involved in other bodily fluids and tissues (for example, ovarian eggs). Similar emphasis on voluntary HMD has been made by the Human Milk Banking Association of North America (HMBANA), as well as by Australian Milk Banks (Swanson, 2014). Specifically, the “HMBANA milk banks continue to believe that relying on volunteer donors is the only ethical way to collect and distribute the human milk donations critically ill infants desperately need” (HMBANA, 2014). In some countries, such as Denmark and Norway, milk donors receive monetary compensation not for their milk, but for the time they pump, the electricity they use while operating the pump, and the expenses of transporting their milk to the milk bank (Grøvslien & Grønn, 2009).

In the following section, we more specifically address the inconsistent definitions of HM and its donation which lead to regulatory variation. We propose that this variation helps to explain, at least in part, why HMD is missing from the philanthropy literature.

Inconsistent Definitions and Regulatory Challenges for HMD

There are currently three applied classifications for HM around the world: HM as a food, HM as tissue, and HM as a therapeutic good/medicine (Cohen, 2019). Each classification requires a different regulatory framework and reflects different local and national priorities. The World Health Organization (WHO) classifies breast milk among a group of medical products of human origin (MPHO). These “biological materials that are derived wholly or in part from the human body and are intended for clinical application” (Noël & Martin, 2015). Examples of MPHO include blood, ovarian eggs, and sperm. Unlike all other MPHO, that have clear regulations and guidance around how they should be selected, screened, and tested, it is not the case with HM (Noël & Martin, 2015). HM is the only MPHO that does not have international standards nor guidance associated with it, rather regulation has fallen to the regional or national level, which in some cases has resulted in no substantive regulation at all (PATH, 2013). In the United States, for example, the federal regulations surrounding blood and other tissues do not apply to HM. Both the American Association of Tissue Banks and the Food and Drug Administration do not classify HM as “as anything” (Cohen, 2017, p. 495). Moreover, the 1984 National Organ Transplant Act which outlaws the buying and selling of body products in the United States also does not cover HM (Cohen, 2017, 2019). Based on our assessment, the definitions of HM influence the regulation of HMD.

HM as a food: HM is the ideal food for infants’ growth and development (WHO, 2003). Food is regulated for safety and to prevent contamination. When produced in women’s bodies, HM’s regulation is complex. Countries like Brazil and Canada regulate HMD as food (PATH, 2013; Paynter & Hayward, 2018; St-Onge et al., 2015). In both countries, the donor-selection process is rigorous, the milk undergoes frequent quality inspections, and the shipment of the milk from the donors to the banks is regulated. In addition, the pasteurization process is in accordance with food preparation guidelines. When HMD is regulated as food, it is less costly for the recipients, and for the hospitals that operate the nonprofit milk banks. Food regulation is not as rigid or imposing as tissue regulation (see the following) but still provides safeguards and checkpoints. For babies in neonatal intensive care units (NICUs), for example, who consume donated HM that is regulated as food, HM is already included in the hospital’s cost of care. Still, there are recognized caveats. HMD has risks as a non-manufactured product that “are different from risks associated with the food industry, making it more difficult to regulate than a simple food” (PATH, 2013, p. 22).

HM as tissue: HM is categorized in some countries as a tissue donation. Such categorizing involves a comprehensive regulatory framework for ensuring compliance and enforcement, a surveillance system, and accreditation. Regulations support insurance reimbursement when it is recognized nationally as a tissue. In the United States, California, New York, and Maryland are the only states that regulate HM as tissue and thus regulate HM banks as tissue-banking (Cohen, 2017, 2019). Such regulations of HM as tissue also exist in France (Azema & Callahan, 2003; PATH, 2013). When regulated as a donated tissue, the public often perceives HMD as safer (Azema & Callahan, 2003). However, regulating tissue donation requires a level of consistency and countries in particular may find it difficult to comply with the quality and safety requirements of such regulations, given the costs (Cohen, 2019; PATH, 2013).

HM as a therapeutic good/medicine: HM is increasingly seen as “a drug in the full sense” (Cohen, 2019, p. 589). HM can be regulated as a unique medicine-food that is intended for the specific dietary management of a disease, or condition for which distinctive nutritional requirements are needed (e.g., special health condition of premature babies). Such regulation is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements are established by medical evaluation (Cohen, 2019). In this case, HMD must meet certain safety requirements through “Good Manufacturing Practices” and show that there is no harm to the individual receiving the product. In Norway, for example, the National Board of Health states “that human milk is both biologically active tissue and nutritional support” (Grøvslien & Grønn, 2009, p. 207). Norway is among the very few countries in which HM banks are using raw, unpasteurized milk for premature infants. When HM is defined as “a therapeutic good/medicine” the regulations define what equipment is to be used in milk banking, qualifications and exclusion criteria for screening donors, and how to handle the milk (Grøvslien & Grønn, 2009). When regulated as a therapeutic good or medicine, insurance companies are likely to cover HMD because of the possible savings in future health care costs (PATH, 2013).

In sum, unlike the regulation of other bodily fluids, the regulation of HM has been inconsistent, and lacking international standards or clear guidelines. This lack of consistent and coherent regulation likely contributes to the neglect of HMD in the philanthropy literature. In addition, we propose that HMD’s consideration as care work and the subsequent characteristics of the milk donor identity that ensue also explain why little attention has been paid by the literature of philanthropy.

Care Work and Women’s Philanthropy

Over the past decade, there is a growing interest in understanding women’s philanthropy, and more scholars have argued that philanthropy should be understood and explored through a gender lens (Mesch et al., 2011; Newman, 1995). However, studies of women in philanthropy have tended to be concerned about explaining gender differences in volunteering and monetary donation only (e.g., Einolf, 2011; Mesch et al., 2015). While limited in scope, these studies are still valuable, as they have sought to discern differences and identify giving preferences. For example, this body of research finds that women are socialized to be caregivers and that philanthropy allows women to demonstrate empathetic values and caring attributes. Some argue that women are more likely to act “emotionally” and to be centered on reciprocity in their giving (Newman, 1995). Most of the research about women’s philanthropy proposes that gender differences are likely driven “by a difference in altruism between males and females” (Simmons & Emanuele, 2007, p. 544). Indeed, in these studies, women are considered “more selfless, empathetic, and generous than men” (Mesch et al., 2011, p. 3), and prosocial values are strong explanations for gender differences (De Wit & Bekkers, 2016).

Care Work and the Characteristics of the Milk Donor Identity

As noted, the phenomenon and practice of HMD have been considered a female act of care work (Carroll, 2015). Care work refers to work done by women, usually in the domestic sphere, unpaid and often unrecognized, thus virtually invisible (Dickenson, 2001; England, 2005; Waring, 1988). We argue this drives the unique characteristics of the milk donor identity. According to identity theory (Charng et al., 1988; Piliavin & Callero, 1991), individuals are driven by the range of identities they carry. It is well established that self-identity has impact on all giving behaviors (e.g., blood donations, volunteering; White et al., 2017). Donors who engage in bodily gifting often hold identities of helpers, altruists, or generous givers (e.g., Piliavin & Callero, 1991). Studies on milk donation have found that milk donor identity is complex, comprised maternal and female identities (Gribble, 2014; Oreg & Appe, 2020; Palmquist & Doehler, 2014) and at times is influenced by a distinct professional identity of a health care provider (e.g., nurse, physician; Oreg & Appe, 2020).

There is “fluidity” in the milk donor’s identity: in some cases, milk donation is portrayed by milk banks as a gift from the “baby donor,” who is generous to share his milk, and the mother who produced and pumped the milk from her own body, gave her baby’s milk to other babies (Oreg & Appe, 2020). Such representation portrays the baby as the donor, thus make the female donor symbolically invisible (Oreg, 2019, 2020; Oreg & Appe, 2020). Another scenario that is portrayed by HM banks is that the donation was made by both baby and mother, as a unique mother-baby donor dyad (mother and baby are donating their milk) which yet again, omits the role of the mother as the donor. At times the entire family donate their milk as a joint family effort and contribution (see Oreg & Appe, 2020).

Donor identity is also shaped by how milk donation is perceived in society and culture in which the donation is made (Kent et al., 2019). For example, when milk is donated to milk banks, it can be perceived by society as a biohazard and a threat (e.g., milk can be contaminated). Some studies suggest that when milk banks pasteurized HM and process it as a medical substance (e.g., milk undergoes treatment and testing procedures), the milk becomes “impersonal,” and only then socially acceptable and safe for exchange (Kent et al., 2019; Palmquist, 2015; Zizzo, 2011). The process in which the milk becomes “cleaner and safer” detaches it from the original donor, and thus symbolically, the milk donor herself is rendered invisible (Palmquist, 2015; Zizzo, 2011). Moreover, there is a subset of milk donors who are bereaved mothers who choose to donate their milk in memory of their babies who died in stillbirth or prenatal loss. For them, milk donor invisibility corresponds with the larger “silencing” of their grief and experience, due to the taboo and the discourse around infant loss, particularly in Western societies (see Hazen, 2006; Oreg, 2019, 2020).

Milk banks highlight the personal and intimate relationship between HM donors and recipients, by publishing stories and pictures of donors and recipients, with captions of love and personal expressions of gratitude (Oreg & Appe, 2020). In addition, Swanson (2014) shows how milk banks construct a feminine language, and both donors and recipients are bonded in a “gendered vision of caring” (p. 168). The donation is perceived as a “maternal gift” and as “maternal corporeal generosity” (Cassidy, 2012, p. 96; Shaw, 2003). Such terminology, together with the complex nature of HM donor identity, implies that the women who donate do so as mothers and not as HM donors. Treating HM as a gift from a mother or from the mother-baby dyad further positions HMD as a female act of care work rather than an act of philanthropy.

Future Avenues of Research

The inconsistencies in the definitions of HMD and its regulation as well as its designation as female-maternal care work, namely the HM donors’ identity as mothers and women, contribute to HMD not being considered as an act of philanthropy. We argue that HM donors and HM as a donated substance should be further studied from a philanthropy perspective, in particular through the lenses of bodily gifting and women in philanthropy (e.g., Mesch et al., 2011).

Due to the “fragmented and unstable” (Cohen, 2019, p. 557) HMD regulatory framework in many countries and jurisdictions, organizations such as the Human Milk Banks Association of North America, the European Milk Banks Association, Human Milk Banking Association of South Africa, and the United Kingdom Association for Milk Bank have all developed their own guidelines to ensure the safe use of donated milk. Such self-regulation fills in for the lack of federal and state regulations (Weaver et al., 2019). This raises questions for future research, namely about who should take responsibility and accountability for the milk donation process and for recipients’ health. The concern is greater with respect to the responsibility inherent in the process of peer-shared (e.g., online) HM (Reyes-Foster et al., 2015, 2017), which is not subject to regulation and should be considered within the context of “relative risks” (Palmquist et al., 2019) that may include adulteration or contamination. Further research on nonprofit milk banks and other channels of milk donation and sharing are ripe for empirical study.

In addition, while the donation of time and money is the focus of most of the literature on women’s philanthropy, we urge the extension of questions about women’s philanthropy to include the donations of women’s bodily gifts. For example, research on HMD can complement the rich literature about the links between gender, identity, and the motivation to give (Charng et al., 1988; Drezner & Garvey, 2016). Beyond the theoretical value of such research, insights about the relationships between donor identity attributes and the motivation to donate may be used to expand the pool of women who choose to voluntarily donate their milk.

Additional directions for future research derive from our discussion about donor identity and the role that nonprofit milk banks have (beyond self-regulation) in the construction of milk donors’ identity. Comparisons of this role to other forms of bodily gifting, for example, non-profit blood banks in shaping blood donors’ identity, are warranted. Moreover, our arguments about the role of identity in the HMD process could be assessed through research about the process and nature of other pregnancy-contingent donations, such as placentas and umbilical cord blood. Our hunch is that they might be similar to HMD, particularly related to donor identity complexities. Attention to these and related issues, from a philanthropy lens, will provide valuable insights about women’s bodily gifting and contribute important understanding about an understudied phenomenon.

Footnotes

Acknowledgements

We thank the editor and three anonymous reviewers for their very helpful comments throughout the review process.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Ayelet Oreg

Susan Appe

Author Biographies

Ayelet Oreg is a social worker and a lecturer in The Bob Shapell School of Social Work Tel Aviv University, Israel. Her research focuses on prosocial behaviors in medical contexts, in particular on the motivations for, and process of formal and informal human milk donations. In addition, she studies philanthropic giving as a means of coping with trauma and loss.

Susan Appe is an assistant professor at Rockefeller College at the University at Albany, NY USA. Her research focuses on government–nonprofit relations and the dimensions and evolution of the nonprofit sector. She examines how government policy influences and shapes civil society and nonprofit organizations; how and why nonprofit organizations respond to government regulation and policy; and the relationship between civil society, foreign aid, and development.

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