donating breastmilk in the uk. regulated and unregulated practices: a review of the (ethical)...
TRANSCRIPT
Donating breastmilk in the UK. Regulated and unregulated practices: A review of the (ethical)
issues.
Dr Sally DowlingSenior Lecturer,
Department of Nursing and Midwifery, UWE
Outline
• Why is breastmilk donated?– Who to? Who by?
• The regulation of milk donation in the UK– UKAMB, NICE
• Milk sharing– Who to? Who by?– Use of the internet
• Ideas of risk and the nature of donation– How is this seen in the UK?– Elsewhere? Why different?
• The perception of human milk– How does donation of milk differ from other donations?
Historical issues
• Informal milk sharing• Formal arrangements
– Wet nursing (class issues)– ‘mammies’ (race/ethnicity issues)
• Milk banking– Rise
• First in Vienna in 1909, first in UK 1939– Fall
• Many stopped operating in the late 1980s– Re-emergence
• Often because of local campaigns/charitable fundraising
Why give babies donated milk?
• International feeding recommendations:– exclusive breastfeeding for six months– breastmilk alongside appropriate foods for at least 2 years
• Hierarchy of ‘best alternatives’– expressed breast milk from an infant’s own mother,– breast milk from a healthy wet-nurse – breast-milk from a human-milk bank– a breast-milk substitute fed with a cup
• Recommendations based on good evidence– for developed as well as developing countries
WHO/UNICEF, 2003, p.10
Why is milk donated?
• Women have excess supply– Increase in numbers pumping
• Availability/use of pumps• Culture of pumping
– Some make more than their baby needs• From the beginning• As time goes on
– Reluctance to throw it away, desire to help
• Death/illness of a baby
Why might babies be given donor milk?
• Physiological and social reasons• Baby is premature or unwell
– Risk of NEC– Risk of infection– BM easier to digest
• Mother has:– Died/is ill/unable to breastfeed– Had a double mastectomy/other surgery– Returned to work
• Unable to breastfeed or express milk there• Unable to express frequently enough to maintain supply
• Parents want to give their baby/child breastmilk (for longer)– Baby is adopted– Alternative strategy/commitment to breastfeeding
Milk banks (in the UK)
• UKAMB set up in October 1997 – charity with the motto ‘Every Drop Counts’• 17 milk banks across the country
– often re-established after local campaigns– some have excess; often don’t have enough– different ways of operating
• Only take milk from women who have healthy, not yet weaned babies < 6 months old.
• Don’t take milk from women who:– Smoke or use illegal drugs.– Have tested positive for HIV, hepatitis B or hepatitis C, human T-cell lymphotropic virus
(HTLV) or syphilis or is a risk from CJD.– Have had a blood transfusion.
The regulation of milk donation
• UK Association for Milk Banking (UKAMB)• NICE Clinical Guideline (2010) on the operation of donor milk banks
- How milk is tested, transported, treated, stored (labelled, tracked).-Who should and shouldn’t donate milk.- How donors should be screened.-Who should receive donated milk.
Other forms of milk sharing
• Banked milk only available to premature/very sick babies– ‘Breastfeed exclusively for six months’ advice– Other women may want donor milk for a variety of reasons
• Wet nursing/informal sharing– How much is this happening?
• Use of the internet– Private practice has become public pursuit (Akre et al, 2011)– National/international and local
• Important differences between two above (and overlap)• Free/for money• Advice about this in the UK not prescriptive
– NCT (emphasis on choice and reducing risk)– BFN, UKAMB (drawing on NICE)
Risk?
• Relative safety usually compared to formula milk or banked donor milk• What are the risks?
– Infection/contamination• Don’t know exactly what you are getting (truth telling)• Poor hygiene/inadequate storage• Risk slight in some circumstances
• Risks of milk sharing vs risks of formula use (Gribble and Hausman, 2012)– Formula use = increased risk of:
• non-infectious diseases• gastro-intestinal disease and respiratory infections• contamination
Risk?
‘Human milk purchased via the Internet exhibited high overall bacterial growth and frequent contamination with pathogenic bacteria, reflecting poor collection, storage, or shipping practices. Infants consuming this milk are at risk for negative outcomes, particularly if born preterm or are medically compromised’ (Keim et al., 2013)
(based on analysis of samples of milk bought via the internet in the US and compared to milk donated to milk banks)
‘The study focused on for-profit milk market and was not executed in away in a way that approximates altruistic peer-to-peer milk sharing’ (Stuebe et al., 2014, cited in Palmquist and Doehler, 2014).
Ideas of risk
• For some health bodies the risks are unacceptable– Warnings issued by U.S. Food and Drug Administration (FDA), Health Canada, and the
Agency for the Hygiene Safety of Health Products in France (AFSSAPS)– ‘potentially dangerous transactions’ (Dawson David, 2011)
• Not much discussion in the UK, but - ‘this market is dangerous, putting infant health at risk’ (Steele et al, 2015).
• Discussion of risk often doesn’t distinguish – sale/not sale/known/unknown• Strong terms used:
– ‘sharing a body fluid…is dangerous…playing Russian Roulette with your child’s life’– ‘these women who are doing this are going to hurt, even kill, their babies’
(Updegrove and McCann quoted in Palmquist, 2015, p.33)
How do women think about the risks?
• What we know is mostly from the US and Australia• Websites/women using them talk about ‘informed choice’
– Examine all the available evidence– Often not from ‘strangers’/quite a lot may be known about the donor– Sharing information about milk collection and storage– Is the woman breastfeeding her own baby? – Often there is continued contact (‘milk daughter’)
Taken from Palmquist, 2015.
The nature of the donation
• Donation as gift - or reciprocal arrangement – or for money.• Mother to mother support
– Milk sharing vs. cross-nursing (Shaw, 2007).• Donation either seen as amazing gift (tiny babies in incubators) or risky
practice (milk via the internet) – polarised views.• Medicalised practice (milk banking) vs de-medicalisation (milk sharing) • Purpose of the donation alters how it is seen
– Milk for use in milk banks is depersonalised (EBM to PDHM – Zizzo, 2011)– Friends vs. strangers– Sharing intimate bodily fluids with known/unknown others (Hausman, 2011 – ‘viral
fluid’)– Probably much more altruistic sharing happening than for-profit but this isn’t the general
perception
The perception of human milk
• Cultures that see human milk as another bodily substance to be regulated see informal milk sharing as problematic– The ‘yuk factor’ (Shaw, 2004) – responding to the cultural meanings associated with
breastmilk rather than medical issues.• Women’s bodily fluids/sharing bodily fluids
– Leaky, messy, uncontrollable, ‘matter out of place’– Ambiguity – ‘inside/outside’
• Breastmilk is symbolically confusing– Both pure (‘liquid gold’), life-giving and dirty– Can be seen as primitive, crude and embarrassing
• Confusing cultural messages about the nature and usage of breasts.• Ideas about motherhood and how mothering should be practiced.
How is milk donation different from other forms of bodily donation?
• Milk is formed in a lactating woman's body to leave her body and go into the body of another.
• Can now leave a lactating body and travel in new ways (Boyer, 2010).• Can easily be exchanged informally and for free.• Strong cultural meanings
– Islam; ‘milk siblings’ (Zizzo, 2011)– Relating to the ways in which women’s bodies and bodily fluids are seen
Ways of thinking about this
• Milk banking– For all babies, universally available?
• Ethical issues– Law
• selling bodily materials• knowingly transmitting communicable diseases• selling adulterated products
– The idea that breasts, breastmilk and breastfeeding are personal not community property (Schmidt, 2008)
• The commodification of care– Breastmilk donation as care work (Carroll, 2015)
• The links between ideas about women’s bodies/bodily fluids and how milk outside women’s bodies is seen and thought about.
Why does this matter?
• Health professionals may be asked for advice– ‘Health professionals must take action’ (Steele et al, 2015)– Influenced by personal opinion? (the ‘yuk factor’)– Lack of information– The onus is on women to protect themselves and their children (relies on truth telling?)
• Do we need to think about clearer advice to women who might want to do this?– Or is it a private matter?– What if a baby becomes unwell?
• Do we need regulation?• What would be a good source of information for women who might consider informally
sharing breastmilk?– Information on risks (what are they? How to judge them?)– Information about how to share milk safely
Conclusions
• Donating and sharing breastmilk has increased in prevalence and possibilities.
• The scale and scope of informal milk sharing in the UK is unknown.• Ideas of risk frame the ‘official’ reaction to sharing breastmilk via the internet
(but not in the UK).• Little is known about how individual women understand and make sense of
these risks.• Many opportunities to donate and receive breastmilk have arisen in
grassroots woman-to-woman ways (in a similar way to other forms of parenting and breastfeeding support).
• Breastmilk donation differs from other forms of donation in important ways.
References Akre, J.E., Gribble, K.D. & Minchin, M. (2011) Milk sharing: From private practice to public pursuit. International Breastfeeding Journal, 6(8)Boyer, K. (2010) Of care and commodities: breast milk and the new politics of mobile biosubstances. Progress in Human Geography, 34(5):5-20.Carroll, K. (2015) Breastmilk donation as care work. In In Cassidy, T. & El Tom, A., eds. (2015) Ethnographies of Breastfeeding. London/New Delhi/New York/Sidney: Bloomsbury; pp.173-186.Dawson David, S. (2011) Legal commentary on the sale of human milk. Public Health Reports, 126:165-166.Geraghty, S.R., Heier, J.E. & Rasmussen, K.M. (2011) Got milk? Sharing human milk via the internet. Public Health Reports, 126:161-164.Gribble, K. (2012) Biomedical ethics and peer-to-peer milk sharing. Clinical Lactation, 3(3):108-111.Gribble, K. (2013) Peer-to-peer milk donors’ and recipients’ experiences of donor milk banks. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 42:451-461.Gribble, K. & Hausman, B.L. (2012) Milk sharing and formula feeding: Infant feeding risks in comparative perspective? Australasian Medical Journal, 5(5):275-283. Hausman, B. (2011) Viral Bodies: Breastfeeding in the age of HIV/AIDS. University of Michegan Press.Keim, A.A., Hogan, J.S. , McNamara, C.A. et al (2013) Microbial Contamination of Human Milk Purchased Via the Internet. Pediatrics, 132(5): e1227-e1235
Keim, S.A., McNamara, K.A., Jayadeva, C.M. et al. (2014) Breast milk sharing via the internet: The practice and health and safety considerations. Maternal and Child Health Journal, 18:1471-1479.NICE (2010) Donor milk banks: the operation of donor milk bank services (NICE clinical guideline 93). Available from: http://www.nice.org.uk/guidance/cg93/resources/guidance-donor-milk-banks-the-operation-of-donor-milk-bank-services-pdf Palmquist, A. (2015) Demedicalizing Breastmilk: The Discourses, Practices and Identities of Informal Milk Sharing. In Cassidy, T. & El Tom, A., eds. (2015) Ethnographies of Breastfeeding. London/New Delhi/New York/Sidney: Bloomsbury; pp.23-44.Palmquist, A. & Doehler, K. (2014) Contextualizing online human milk sharing: Structural factors andlactation disparity among middle income women in the U.S. Social Science and Medicine, 122:140-147.Shaw, R. (2004) The virtues of cross-nursing and the ‘Yuk Factor’. Australian Feminist Studies, 19(45):287-299.Shaw, R. (2007) Cross-nursing, ethics, and giving breast milk in the contemporary context. Women’s Studies International Forum, 30:439-450.WHO/UNICEF (2003) Global Strategy for Infant and Young Child Feeding. World Health Organisation: Geneva.Zizzo, G. (2011) ‘Donor breast milk is a product from the hospital, not somebody’: Dissassociation in Contemporary Milk Banking. Outskirts Online Journal, 24.
