To Consent, or Not to Consent, That Is the Question: Ethical Issues of Informed Consent for the Use of Donor Human Milk in the NICU Setting.

BACKGROUND: Evidence supports the superiority of mother's own milk (MOM) in reducing the comorbidities common to prematurity and very low birth weight. In situations where an insufficient amount of MOM is available or maternal contraindications prevent its use, pasteurized donor human milk (DHM) is a viable substitution. When DHM is deemed best, a common practice in many neonatal intensive care units (NICUs) is for parents to provide their consent. However, no universal mandate for informed consent exists. Often, healthcare providers present and obtain the consent for DHM use prior to delivery or shortly after birth and this consent may be "bundled" along with other standardized NICU treatment consents. This approach is likely less than ideal since it provides insufficient time for decision making and often precedes the mother's ability to initiate the expression of her own milk. PURPOSE: To review the history of DHM use and the ethics surrounding the consenting process including the ethical principles involved in infant feeding decision making. We argue for the standardization and consistent use of informed consent for DHM in the NICU and offer clinical practice implications. FINDINGS/RESULTS/IMPLICATIONS FOR PRACTICE AND RESEARCH: Providers face several challenges in the consenting process for the use of DHM in the NICU setting. These include limited time to support parents and educate them appropriately during the decision-making process. Standardized and consistent use of informed consent is essential to address the ethical concerns surrounding the use of DHM in the NICU setting.

Informal Breast Milk Sharing in a Muslim Country: The Frequency, Practice, Risk Perception, and Risk Reduction Strategies Used by Mothers.

Introduction: Turkey is the first and only Islamic country which has initiated a process to establish a milk bank. However, the effort was abandoned because of religious concerns. Informal breast milk sharing has become a practical alternative to some. Research Aims: To document the religious concerned views and attitudes toward breast milk sharing and to determine risk reduction strategies of mothers in an Islamic country. Materials and Methods: Participants comprised volunteers from relevant forums or members of social media groups on the Internet. The participants (n = 435) were divided into three groups: those who did not share milk (n = 371), donors (n = 48), and receivers (n = 16). A prepared questionnaire was used for each group as a data collection tool. Results: 14.7% of the participants were experienced in informal milk sharing. Seventy-five percent of the recipients and 85.4% of the donors did not enter into a written agreement. Religious rules on milk sharing were reflected in three ways: asking about the infant's gender, limiting the number of sharing parties to 3, and knowing the identity of the donor or recipient. Of the participants, 77.3% believed that it was necessary to establish a milk bank in Turkey. However, 19.5% of the respondents reported that they would not feed their infant with donor milk because of reasons related to the issue of "milk kinship" in Islam. Conclusions: Informal milk sharing is a reality and risks similar to those stated in the literature are undertaken. Milk sharing is frequently performed independent of religious concerns and commercial purposes, Comprehensive measures to minimize disease transmission are not routinely implemented.

A critical review of human milk sharing using an intersectional feminist framework: Implications for practice.

OBJECTIVE: Driven by a growing body of research demonstrating the health benefits of human milk over substitute feeding preparations, the demand for human milk donations in North America is rapidly increasing. In the context of an increasingly institutionalized and commercialized human milk market, informal peer-to-peer milk sharing networks are commonplace. Race, class, gender and sexual orientation are intersecting aspects of identity and power that influence participation in breastfeeding and the domain of milk exchange. Using an intersectional feminist framework, we critically review studies of participation in milk sharing to examine the identities and socio-political circumstances of milk sharing participants. DESIGN, SETTING AND PARTICIPANTS: We use an intersectional feminist framework to conduct a critical review of the evidence pertaining to human milk sharing participants in North America. The search strategy included relevant databases (Pubmed, CINAHL) and hand-searches of key journals. We include research studies with participants in the United States and Canada and where participants milk shared as recipients or donors. FINDINGS: Of those studies that examine socio-political identities such as race and class, participants are largely white and high-income. Many studies did not examine socio-political identities, and none examine sexual orientation. Themes we identify in this review include: (1) Socio-political identities; (2) Milk sharing supports parental health; (3) Socio-political influences; (4) Resistance against institutionalization. IMPLICATIONS FOR PRACTICE: Maternity care providers can advocate for improved access to breastfeeding support and pasteurized human donor milk to address inequities. Maternity care providers can bring consciousness of intersecting socio-political identities to discussions with families about milk-sharing.

Creating religiously compliant milk banks in the Muslim world: a commentary.

Human milk banks are vital for providing donor milk to infants for whom there are maternal or postnatal barriers to the mother's own milk. Although more than 35 countries have active milk banks, not one of those is a Muslim country.(1) Despite widespread support for breastfeeding across the Muslim world, religious constraints surrounding milk-sharing have created challenging barriers to the creation of milk banks. The religious objection centres around the Islamic tenet that consuming human milk builds a kinship bond between individuals who have consumed the same woman's milk which prohibits future marriage between the 'milk-brothers and sisters.' While a small-scale, experimental 'milk exchange' programme has been attempted in two Muslim countries (Kuwait and Malaysia), the only proposed milk bank in the Muslim world was a pilot programme in Turkey that was halted because of religious concerns. The problem with milk banking is the step in the process during which the milk from individual donors is pooled and de-identified, making it impossible to trace its origins and acknowledge the newly formed kinship relationship. To meet the need for Muslim children to be able to access human milk while remaining compliant with the prevalent understanding of Islamic doctrine on milk-sharing, we propose a new approach to milk banking that we term the Conditional Identified Milk Banking System (CIMBS). In this new system, both the donor's and recipient's identities are accessible to all parties through a voluntary registry, and the milk-pooling is limited to three milk donors. Based on recent survey data, we believe that there would be receptivity among practicing Muslims and religious leaders to this alternative approach.

Human milk banking and milk kinship: Perspectives of mothers in a Muslim country.

AIM: The present study aims to determine the knowledge, attitudes and views of mothers regarding infant feeding, breast milk, wet-nursing, milk kinship and human milk banks. METHODS: This descriptive cross-sectional study was composed of 1042 mothers who delivered at two different hospitals in Turkey. RESULTS: Almost half of the participating mothers, 49.9%, agreed with the establishment of alternative HMBs in Turkey. Only 7.7% of the mothers in this study expressed views in favour of the establishment of Western-style HMBs. Approximately half of the mothers (42.4%) indicated that they were against the establishment of any kind of HMBs in Turkey. Only 9.2% of the mothers in this study stated that they would volunteer to donate their breast milk to the Western-style HMBs, and only 6.9% of the mothers approved obtaining milk from this type of HMB. Finally, 44.2% of the mothers stated that they would donate their breast milk to the alternative HMBs, and 31.9% of the mothers approved obtaining milk from this type of HMB. CONCLUSION: This is the first study conducted among mothers in a Muslim community about issues such as infant feeding, breast milk, wet-nursing, milk kinship and HMBs. The majority of the mothers in this study are against the establishment of Western-style HMBs, whereas they have a more positive response to an alternative HMB when their religious concerns are relieved.

Human milk banking and milk kinship: perspectives of religious officers in a Muslim country.

OBJECTIVE: The present study aims to determine the knowledge, attitudes and views of the Muslim religious officers regarding infant feeding, breast milk, wet nursing, milk kinship and human milk banks (HMBs). STUDY DESIGN: A total of 401 religious officers were included in the study. Participants included 355 community service religious officers and 46 faculty religious officers. RESULTS: Two hundred fifty-four (63.3%) participants were in favor of administering donor human milk when breast milk is not available from the mothers. To the question 'What kind of human milk bank would you approve as far as the religious sensitivity is concerned?' a majority of the religious officers (71.3%) responded that they would only approve if the milk pool contained a restricted HMB where a limited number of recipients were allowed to use the mixtures in these milk pools. Only 7 (1.7%) participants advocated initiating Western-style HMBs in Turkey. CONCLUSION: Turkish religious officers have revealed that they would only approve the establishment of an alternative HMB by a maximum three donors where up to three recipients whose identities are known by one another are allowed to use donor milk from each milk pool.

The risks and benefits of human donor breast milk.

CME EDUCATIONAL OBJECTIVES: 1.Review the advantages and disadvantages of donor-banked milk over informal milk sharing.2.List disadvantages of proprietary infant formula for use as supplementation.3.Determine the primary ethical concerns when electing to use donor human milk versus propriety infant formula for supplementation. The benefits of breast-feeding, as well as the risks of some artificial formula, are well known. This growing recognition of the advantages of breast-feeding is reflected in the increased incidence of breast-feeding in recent years. However, one of the most common reasons for premature weaning is low milk supply, perceived or real, followed by nipple or breast pain. Given the increased awareness of the superiority of breast milk, however, more parents are turning to human donor milk to supplement their babies after they have been weaned.

Milk banks through the lens of Muslim scholars: one text in two contexts.

When Muslims thought of establishing milk banks, religious reservations were raised. These reservations were based on the concept that women's milk creates 'milk kinship' believed to impede marriage in Islamic Law. This type of kinship is, however, a distinctive phenomenon of Arab tradition and relatively unknown in Western cultures. This article is a pioneer study which fathoms out the contemporary discussions of Muslim scholars on this issue. The main focus here is a religious guideline (fatwa) issued in 1983, referred to in this article as 'one text', by the Egyptian scholar Yusuf al-Qaradawi who saw no religious problem in establishing or using these banks. After a number of introductory remarks on the 'Western' phenomenon of milk banks and the 'Islamic' phenomenon of 'milk kinship', this article analyses the fatwa of al-Qaradawi 'one text' and investigates the 'two contexts' in which this fatwa was discussed, namely, the context of the Muslim world and that of Muslim minorities living in the West. The first context led to rejecting the fatwa and refusing to introduce the milk banking system in the Muslim world. The second context led to accepting this system and thus allowing Muslims living in the West to donate and receive milk from these banks. Besides its relevance to specialists in the fields of Islamic studies, anthropology and medical ethics, this article will also be helpful to physicians and nurses who deal with patients of Islamic background.

Contemporary ethical issues in human milk-banking in the United States.

Donor human milk has been used in the United States for >90 years, but recent advances in human milk science and laboratory techniques have led to increasing use of this resource. Pediatricians began using donor human milk in the 1900s in response to anecdotal observation that premature infants had better health outcomes when receiving their own mothers' milk. Since then, a formalized human milk-banking system developed in the mid-1980s and distributed >1 million ounces of pasteurized donor human milk in 2008. Despite growth in the use of pasteurized donor human milk, there is little discussion in the medical literature regarding the ethical considerations of collection and use of this resource. Key ethical considerations include issues surrounding medical decision-making and informed consent, increasing the limited supply of human milk, how ethically to allocate this scarce resource, and concerns linked to the marketing of a human milk.

U.S. health policy and access to banked donor human milk.

Abstract Barriers to the use of banked donor milk are numerous, and many patients are denied access to it because of lack of policy explicitly addressing its use. This examination of U.S. health policies, both governmental and professional, addressing child health and breastfeeding suggests where donor milk banking services should be included to fulfill the ethical principles of justice (fair access) and autonomy. The need for research to support future policy development is also highlighted.

The ethics of donor human milk banking.

BACKGROUND: This case study of donor human milk banking and the ethics that govern interested parties is the first time the ethics of donor milk banking has been explored. METHODS AND RESULTS: Two different models of ethics and their direct impact on donor milk banking are examined: biomedical ethics and public health ethics. How these models and principles affect different aspects of donor human milk banking and the parties involved in the delivery of this service are elucidated. Interactions of parties with each other and how the quality and type of interaction affects the ethical delivery of donor milk banking services are described. Crystallization is at the heart of the qualitative methodology used. Writing as a method of inquiry, an integrative research review, and personal experience are the three methods involved in the crystallization process. CONCLUSION: Suggestions are made for improving access and knowledge of banked donor human milk, a valuable public health resource.