1. Regulated and unregulated practices in donating breastmilk: A review of the (ethical) issues. Dr Sally Dowling Senior Lecturer, Department of Nursing and Midwifery, UWE

2. Outline Why is breastmilk donated? – Who to? Who by? The regulation of milk donation – UKAMB, NICE Milk sharing – Who to? Who by? – Use of the internet Ideas of risk and the nature of donation The perception of human milk – How does donation of milk differ from other donations?

3. 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

4. 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

5. 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 of a baby

7. Why might babies need donor milk? Physiological and social reasons Mother has: – Died/is ill/unable to breastfeed – Had a double mastectomy/other surgery – Returned to work Unable to breastfeed there or express milk Unable to express frequently enough to maintain supply Baby is premature or unwell – Risk of NEC – Risk of infection – BM easier to digest

8. Milk banks 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.

9. 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.

10. 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 Use of the internet – Private practice has become public pursuit (Akre et al, 2011) – National/international and local Free/for money Advice about this in the UK not prescriptive – NCT (emphasis on choice and reducing risk) – BFN, UKAMB (drawing on NICE)

11. http://onlythebreast.co.uk/

14. Ideas of risk For some health bodies the risks are unacceptable – ‘potentially dangerous transactions’ (Dawson David, 2011) What are the risks? – Infection/contamination Risk slight in some circumstances Don’t know exactly what you are getting (truth telling) Poor hygiene/inadequate storage 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

15. 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)

16. 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. 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’)

17. 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.

18. 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

19. 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. The links between ideas about women’s bodies/bodily fluids and how milk outside women’s bodies is seen and thought about.

20. Why does this matter? Health professionals may be asked for advice – 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

21. 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.

22. 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. 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.

23. 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-pdfhttp://www.nice.org.uk/guidance/cg93/resources/guidance-donor-milk-banks- the-operation-of-donor-milk-bank-services-pdf 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.

24. sally.dowling@uwe.ac.uk