Health Policy and Ethics of PAMS (Week 2)

Health policy is defined as – “authoritative decisions made within government…intended to direct or influence the actions, behaviors, or decisions of others pertaining to health and its determinants (Longest, 2010).”

Ethics is defined in various ways around the core concepts of moral rightness and related behaviors and decisions. With respect to public health policy ethics, the Public Health Leadership Society (2002) published Principles of the Ethical Practice of Public Health consisting of “12 Principles of the Ethical Practice of Public Health” and accompanying appendices. In the following, a particularly appropriate principle regarding PAMS and current public position statements of the CDC, FDA, and WHO regarding PAMS is Principle 8 –

“Public health programs and policies should incorporate a variety of approaches that anticipate and respect diverse values, beliefs, and cultures in the community.”

Statements Regarding PAMS

                The FDA rightly advises parents that there are risks of infectious disease (emphasizing HIV), chemical and pharmaceutical contaminants, and illness resulting from improper handling of milk as well as counsels to seek guidance from a healthcare provider. The next portion of the statement describes the FDA’s belief that it is not possible to safely handle and adequately screen an individual privately to ensure milk safety. The final portion of this statement refers families to HMBANA.

The CDC does not specifically address intentional sharing of milk, but does address the accidental consumption of milk that is not intended for the recipient child, again, focusing exclusively on HIV risks –

“The risk of HIV transmission from expressed breast milk consumed by another child is believed to be low because

*  In the United States, women who are HIV positive and aware of that fact are advised NOT to breastfeed    their infants

*  Chemicals present in breast milk act, together with time and cold temperatures, to destroy the HIV present in expressed breast milk

*  Transmission of HIV from single breast milk exposure has never been documented”

The WHO

Courtesy of Eats On Feets

Courtesy of Eats On Feets – Three Generations of PAMS participation.

discusses several options beyond the closed biological breastfeeding relationship-

“For those few health situations where infants cannot, or should not, be breastfed, the choice of the best alternative – expressed breast milk from an infant’s own mother, breast milk from a healthy wet-nurse or a human-milk bank, or a breast-milk substitute fed with a cup, which is a safer method than a feeding bottle and teat – depends on individual circumstances.”

Ethics of Statements

                The CDC and FDA statements fail to provide families with adequate information regarding health risks associated with PAMS (Gribble & Hausman, 2012). In the case of HIV, transmission rates in breastfeeding dyads where the parent is known to be HIV positive and in resource limited settings is less than 15% (Coovadia & Bland, 2007). Further, these statements fail to acknowledge the cultural and religious factors of milk kinship present in Islam and Orthodox Judaism that make accepting milk from a milk bank or other anonymous source a choice in violation of faith. Many families in the PAMS culture have ethical objections to hierarchy of need placed upon recipient families by HMBANA (Gribble, 2013; HMBANA, 2010). The WHO statement clearly addresses the viability of providing milk from a wet nurse (presumed to mean from the breast or through expression) in situations where resources are appropriate.

Closing Thoughts            

                Current policy statements from the CDC and FDA are inadequate in meeting the expectations of ethics associated with public health. STI screening and home pasteurization are, in fact, readily available to most families in the United States. Individuals have the right and responsibility to decide where and with whom they share breastmilk. Donors and recipients who do not currently have access to banked milk still have the right to biologically normal nutrition for their infants. Public health agencies have the vested responsibility to provide comprehensive guidance, which has not been met. These agencies have ready access to the necessary information to provide families with this information, as is evident in the provided resources from milk sharing networks.

Coovadia, H. M., & Bland, R. M. (2007). Preserving breastfeeding practice through the HIV pandemic. Tropical Medicine & International Health : TM & IH, 12(9), 1116-1133. doi:10.1111/j.1365-3156.2007.01895.x

Gribble, K. D., & Hausman, B. L. (2012). Milk sharing and formula feeding: Infant feeding risks in comparative perspective? The Australasian Medical Journal, 5(5), 275-283. doi:10.4066/AMJ.2012.1222

Gribble, K. D. (2013). Peer-to-peer milk donors’ and recipients’ experiences and perceptions of donor milk banks. Journal of Obstetric, Gynecologic, and Neonatal Nursing : JOGNN / NAACOG, 42(4), 451-461. doi:10.1111/1552-6909.12220

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9 thoughts on “Health Policy and Ethics of PAMS (Week 2)

  1. Thank you for your blog post and interesting topic. As a single woman with no children, few friends with children, and limited exposure to obstetric nursing, I was unaware that breast milk sharing was so organized and widespread. In performing a limited literature review, visiting the Eats on Feets website, and glancing over other related webpages, I gained an appreciation for the interest in and power of this movement. I do recognize the significance of milk-sharing, rather than selling, in increasing access to biologically important nutrition for infants that may otherwise not be breastfed.
    I also realize that this approach may raise some questions regarding the safety of the product, and you addressed these concerns well in your post. However, as a novice in this area, I am wondering, are there any home screening tests (similar to the “dipsticks” for alcohol) that can alert a woman to a potential impurity of the breast milk–be it infectious, pharmaceutical, smoking, etc?
    My second question is, what do you believe the future of breast milk sharing holds? I was reading an article from the International Breastfeeding Journal that basically calls upon public health officials to manage and evaluate breast milk sharing programs. Do you believe that government regulation is inevitable, unlikely, beneficial, limiting, or a combination?

    Reference

    Akre, J., Gribble, K., & Minchin, M. (2011). Milk sharing: From private practice to public practice. International Breastfeeding Journal, 6(8), 1-3. doi: 10.1186/1746-4358-6-8

    • Thank you for your thoughtful questions!

      Testing at home
      My background is in Dairy science, and there are many, many test available for immediate diagnostics of milk. However, currently these options do not exist for at home use with breastmilk. There is a group attempting to develop these tests in Colorado. The concern about donated milk is certainly not irrelevant, but let’s stop and take stock of breastmilk biochemistry and lactogenesis for a moment for a better picture.
      Breastmilk is neither sterile nor passive. Environmental bacteria are found on the breast and in the mammary duct system, and there is evidence that these bacteria are beneficial to the infant (Gribble, 2011; ICAN, 2011). Additional components include active anti-viral and anti-bacterial agents, and antibodies to bolster immunity. Additionally, milk is rarely being donated that is not also being provided to the biological child concurrently. With the exception of infants with fragile gastrointestinal tracts or general fragile health, the wide range of normal bacterial and viral loads are not detrimental. Some of these are deactivated by freezing, and that majority of breastmilk is frozen prior to donation (DeVries, 2010). In cases such as Denmark and South Africa, little screening of milk itself is done, as it has not been shown to be significantly effective beyond lifestyle and serologic screening of donors (Bond, 2012). Even in these far less intensive screening programs, there has not been a reported incidence of infants contracting infection from donated milk (Bond, 2012).
      Specifically addressing the dip stick tests – they are not functional and definitely are not recommended for use by lactation professionals. Alcohol specifically metabolizes out of breastmilk at the same rate as it does from the body, so if the donor is not buzzed, the milk won’t create one in the infant. Most prescription and over the counter medications that a donor would be taking are also not harmful to otherwise healthy infants and are very transient in breastmilk. HMBANA does not screen for these other potential contaminants outside of and after the health interview has been completed. Further, the idea of “quality control” testing for donors can seriously undermine their confidence in the biological process of lactogenesis by impacting their self-efficacy. Self-efficacy is a critical component to lactation duration and exclusivity, and in the absence of current literature suggesting necessity, I see this kind of intervention as being more harmful than helpful (Dennis and Faux, 1999).
      The current practice of breastmilk sharing is coming up on 4 years old. In that time it has seen exponential growth in popularity and acceptance, although the practice is still relatively uncommon. I cannot say what the future is, although I would like to think this is the start of finding common ground between PAMS and centralized milk banking. Ideally, each hospital with a NICU would be a repository for donated milk that is accessible to the community as a whole for sliding fees based on SES. Hospitals are already in a position to screen donors (and milk) at low cost. This process could be made much more efficient if it were contracted or joint partnered to an organization such as the Dairy Herd Improvement Association which runs thousands of these tests a day across the country.

      The “Private Practice to Public Pursuit” paper is an early and thought provoking piece. It does not, however, call for management of PAMS, nor does it call upon public health agencies to evaluate the practice. It calls upon public health agencies to “move to engage, to assist those who are involved in milk sharing to make it as safe as possible. We appeal for engagement in the belief that milk sharing will happen regardless of denunciations; that its level of risk is manageable…” This is not unreasonable. Providing comprehensive infant feeding support should be a primary consideration of public health and should be provided widely. This discussion absolutely needs to include the benefits and risks of PAMS, formula feeding, making homemade formulas from recipes on the internet, and providing other milks and foods. In comparison to the later options, PAMS has very manageable and rather low relative risks (Gribble and Hausman, 2012).

      There is, as we speak, a very ill-thought through attempt to legislate PAMS in progress in New Jersey. Assemblywoman Lampitt seeks to legislate that milk sharing networks be considered milk banks, that the state license all milk banks (none currently exist in New Jersey), and create a public health campaign directly targeting PAMS as dangerous. I have been up to my neck in it for months, attempting to support the PAMS community there, but the calls for reason and review of existing evidence have fallen on deaf ears. Unless the practice is critically examined using available evidence, inclusion of lactation professionals, and PAMS researchers (there are a few of us!), the ability of legislation to meet the needs of participants and protect the interests of public health is very limited.

      Bond, A.B. (2012). Methods of screening banked human milk and milk donors. Unpublished. Arizona State University.

      Colonization of the gastrointestinal tract in neonates: A review. (2011). ICAN: Infant, Child, & Adolescent Nutrition, 3(5), 291-295. doi:10.1177/1941406411421629

      Dennis, C., & Faux, S. (1999). Development and psychometric testing of the breastfeeding Self‐Efficacy scale. Research in Nursing & Health, 22(5), 399-409. doi:10.1002/(SICI)1098-240X(199910)22:53.0.CO;2-4

      de Vries, L. (2010). Very low-birth-weight infants born to cytomegalovirus-seropositive mothers fed with their mother’s milk: A prospective study. Breastfeeding Review, 18(3), 35.

      Gribble, K. D. (2011). Mechanisms behind breastmilk’s protection against, and artificial baby milk’s facilitation of, diarrhoeal illness. Breastfeeding Review, 19(2), 19-26.

      Israel-Ballard, K., Coutsoudis, A., Chantry, C. J., Sturm, A. W., Karim, F., Sibeko, L., & Abrams, B. (2006). Bacterial safety of flash-heated and unheated expressed breastmilk during storage. Journal of Tropical Pediatrics, 52(6), 399-405. doi:10.1093/tropej/fml043

    • Beneficience – an action done to benefit others (Beauchamp, 2013).

      The controversy and conflict over the point in which beneficience becomes patriarchy has been debated and weighed since Mill published On Liberty in 1869. Mill attempts to address the extent to which power (legislative policy) has the right to limit the rights of individuals (PAMS community) in a social context. While the actions of policy generation at this junction might present themselves as beneficient, it is still highly likely that determinations would be made which disregard the known preference and vested autonomy of participants “for their own good” (Beauchamp, 2013). The availability of evidence for preliminary policy statements is approaching critical mass at the level of professional organizations. However, without population statistics and review of current practices associated with PAMS, any and all legislative actions seeking to frame and direct the practice are premature and would certainly move beyond responsible beneficience to become patriarchal and oppressive.

      Beauchamp, T. (2013). The principle of beneficence in applied ethics. The Stanford Encyclopedia of Philosophy (Winter 2013 Edition). Edward N. Zalta (ed.). Retrieved from http://plato.stanford.edu/archives/win2013/entries/principle-beneficence/.
      Mill, J. S. (1969). Utilitarianism and on liberty, in the Collected Works of John Stuart Mill, Toronto: University of Toronto Press.

  2. Another great post, Angie! There is probably very little direction from governmental agencies because of the limited experience of the medical community with this reincarnated practice of wet-nursing/milk sharing. Of course, there is also the comfort level most health personnel have in defaulting to commercial formula as the best solution to most breastfeeding problems. PAMS is not going away, so it would seem to be to everyone’s benefit to institute guidelines sooner rather than later. Do you have any data that supports current PAMS families wanting FDA involvement?

    • Great question, Janet, and thanks for your feedback! From being a part of the community, and skimming the qualitative commentary from my research, the impression is that the medical and governing establishments are so wholly consumed by the special interests and lobbying efforts of commercial formula that there is not a reasonable expectation of respectful discourse and policy. Current legislative efforts in New Jersey to effectively outlaw the practice certainly support this expectation. In the absence of an immediate and/or well publicized tragedy involving (even circumstantially) PAMS, I don’t see a great catalyst for generation of policy.

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