Assessing women's knowledge and attitudes toward cord blood banking: policy and ethical implications for Jordan.

BACKGROUND: Despite the global expansion of umbilical cord blood (CB) banking, little is known about public opinion and awareness, especially among Arab Muslim populations. CB banking raises policy questions about funding sustainability and quality standards, as well as ethical debates about profitability, informed consent, and medical justification. This study is the first of its kind in the Arab world, and Jordan has a unique, understudied, yet highly relevant setting, especially as a regional medical hub with advanced medical and health policy infrastructures. In addition, the first private and public CB banks are expected to open in 2016. STUDY DESIGN AND METHODS: The authors developed and administered, over a 5-month period, an anonymous survey to investigate public opinion and knowledge about CB banking in Jordan. The survey was administered to women in maternity outpatient clinic waiting rooms at five different hospitals. RESULTS: More than 75% of respondents indicated they knew nothing about CB banking in Jordan, and more than 50% had never heard of CB banking before. However, overall public opinion about CB storage is positive. Important factors related to public opinion were also identified, demonstrating that most women want more information on CB banking, especially from their obstetrician. CONCLUSION: This widespread lack of awareness is likely contributing to misinformation, lack of knowledge, and unfavorable perspectives toward CB donation and research. The results have important implications for the development of national and regional policies and educational campaigns on CB banking targeting both physicians and patients.

The role and potential of umbilical cord blood in an era of new therapies: a review.

In light of pioneering findings in the 1980s and an estimation of more than 130 million global annual births, umbilical cord blood (UCB) is considered to be the most plentiful reservoir of cells and to have regenerative potential for many clinical applications. Although UCB is used mainly against blood disorders, the spectrum of diseases for which it provides effective therapy has been expanded to include non-hematopoietic conditions; UCB has also been used as source for regenerative cell therapy and immune modulation. Thus, collection and banking of UCB-derived cells have become a popular option. However, there are questions regarding the cost versus the benefits of UCB banking, and it also raises complex ethical and legal issues. This review discusses many issues surrounding the conservation of UCB-derived cells and the great potential and current clinical applications of UCB in an era of new therapies. In particular, we describe the practical issues inherent in UCB collection, processing, and long-term storage as well as the different types of 'stem' or progenitor cells circulating in UCB and their uses in multiple clinical settings. Given these considerations, the trend toward UCB will continue to provide growing assistance to health care worldwide.

Cord Blood Banking in the Arab World: Current Status and Future Developments.

Umbilical cord blood transplants are now used to treat numerous types of immune- and blood-related disorders and genetic diseases. Cord blood (CB) banks play an important role in these transplants by processing and storing CB units. In addition to their therapeutic potential, these banks raise ethical and regulatory questions, especially in emerging markets in the Arab world. In this article, the authors review CB banking in five countries in the region, Jordan, Saudi Arabia, Egypt, Qatar, and the United Arab Emirates, selected for their different CB banking policies and initiatives. In assessing these case studies, the authors present regional trends and issues, including religious perspectives, policies, and demographic risk factors. This research suggests strong incentives for increasing the number of CB units that are collected from and available to Arab populations. In addition, the deficit in knowledge concerning public opinion and awareness in the region should be addressed to ensure educated decision-making.

Ethical and legal issues raised by cord blood banking - the challenges of the new bioeconomy.

• Cord blood banking raises ethical and legal issues which highlight the need for careful regulatory approaches to the emerging bioeconomy. • Consent processes for both private and public banking should be inclusive and representative of the different familial interests in the cord blood. • Property law is a potentially useful way of understanding the mechanisms for donation to both public and private banks. • Increasing tensions between public and private models of banking may require the adoption of hybrid forms of banking.

Not the usual suspects: addressing layers of vulnerability.

This paper challenges the traditional account of vulnerability in healthcare which conceptualizes vulnerability as a list of identifiable subpopulations. This list of 'usual suspects', focusing on groups from lower resource settings, is a narrow account of vulnerability. In this article we argue that in certain circumstances middle-class individuals can be also rendered vulnerable. We propose a relational and layered account of vulnerability and explore this concept using the case study of cord blood (CB) banking. In the first section, two different approaches to 'vulnerability' are contrasted: categorical versus layered. In the second section, we describe CB banking and present a case study of CB banking in Argentina. We examine the types of pressure that middle-class pregnant women feel when considering CB collection and storage. In section three, we use the CB banking case study to critique the categorical approach to vulnerability: this model is unable to account for the ways in which these women are vulnerable. A layered account of vulnerability identifies several ways in which middle-class women are vulnerable. Finally, by utilizing the layered approach, this paper suggests how public health policies could be designed to overcome vulnerabilities.

[Self-sufficiency, needs, prescription and safety of blood products]. / Autosuffisance, besoins, prescription et sécurité des produits sanguins labiles.

The current issues debate will bring together experts around the themes of self-sufficiency (in its national and European aspects) and of needs in cellular blood products. The point of view of the manufacturer and prescribers of blood products will be confronted.

Umbilical cord blood banks. Ethical aspects. Public versus private banks.

The creation of umbilical cord blood (UCB) banks raises interesting medical, social, economic and ethical issues. This paper reviews the ethical problems specifically. In this respect, it evaluates: a) whether there are advantages to the use of UCB compared to bone marrow, b) whether or not it is ethical to create UCB banks, c) whether their creation is ethically acceptable in terms of their clinical usefulness or d) the use made of them for therapeutic purposes, and finally e) whether their creation is ethically justified from a cost/profitability point of view. We focus primarily on evaluating the ethical controversy between public and private banks, particularly on whether it is ethical to bank autologous blood in private UCB banks, on the basis of its limited possibilities for use by the cord blood donor. We can conclude that, from an ethical point of view, autologous blood banks have limited acceptance among specialised researchers, scientific societies and other public institutions. Therefore, we believe that it is ethically more acceptable to support the creation of public UCB banks for medical and social reasons and, above all, based on the principle of justice and human solidarity. Nevertheless, there is no definitive ethical argument why a couple, according to their autonomy and freedom, cannot bank their child's UCB in a private bank. An equally acceptable solution could be the creation of mixed banks, such as that proposed by the Virgin Health Bank or like the Spanish system where autologous samples can be stored in public banks but with the proviso that if at any time the stored sample is required by any person other than the donor, it would have to be given to them.

Biobanks between common good and private interest: the example of umbilical cord blood private biobanks.

Storage of human biological samples and personal data associated with them is organised in Biobanks. In spite of expectation given by biobanks in medicine, their management involved some ethical questions, for example, the need for policies to regulate economic interests, potential commercial use of data (including patents), private sector financing, ownership of samples and benefit sharing. In the context of contributing to the general public interest, we can consider the act of giving biological material to biobanks as a donation, in which the donation constitutes part of a generalised form of reciprocity in which the act of donation contributes to society's common good. Starting from this perspective, we move into a different situation represented by the biobanking of umbilical cord blood for personal use. We used the example of the private biobanking of umbilical cords to demonstrate the restrictive utility of the collection and preservation of cord blood for personal use in private biobanks, in the context of society's common good. In summary, a system based on solidarity seems to be able to guarantee necessary levels of supply for the donation of biological material to biobanks.

Ethical issues relating the the banking of umbilical cord blood in Mexico.

BACKGROUND: Umbilical cord banks are a central component, as umbilical cord tissue providers, in both medical treatment and scientific research with stem cells. But, whereas the creation of umbilical cord banks is seen as successful practice, it is perceived as a risky style of play by others. This article examines and discusses the ethical, medical and legal considerations that arise from the operation of umbilical cord banks in Mexico. DISCUSSION: A number of experts have stated that the use of umbilical cord goes beyond the mere utilization of human tissues for the purpose of treatment. This tissue is also used in research studies: genetic studies, studies to evaluate the effectiveness of new antibiotics, studies to identify new proteins, etc. Meanwhile, others claim that the law and other norms for the functioning of cord banks are not consistent and are poorly defined. Some of these critics point out that the confidentiality of donor information is handled differently in different places. The fact that private cord banks offer their services as "biological insurance" in order to obtain informed consent by promising the parents that the tissue that will be stored insures the health of their child in the future raises the issue of whether the consent is freely given or given under coercion. Another consideration that must be made in relation to privately owned cord banks has to do with the ownership of the stored umbilical cord. SUMMARY: Conflicts between moral principles and economic interests (non-moral principles) cause dilemmas in the clinical practice of umbilical cord blood storage and use especially in privately owned banks. This article presents a reflection and some of the guidelines that must be followed by umbilical cord banks in order to deal with these conflicts. This reflection is based on the fundamental notions of ethics and public health and seeks to be a contribution towards the improvement of umbilical cord banks' performance.

[The banks of umbilical cord blood: biomedical and bioethical issues]. / Los Bancos de sangre de cordón umbilical: aspectos biomédicos y bioéticos.

This paper deals with the actuality of the Umbilical Cord Blood Banks (UCBB). Its aim is to offer the necessary notions for the understanding of their nature and of the ethical problems which they carry associated. In order to do this it will lean, on one hand, on the actual bibliography about blood of the umbilical cord and its present and future applications, and on the other hand, on the document of the European Group of Ethics where this issue is discussed. It is of special interest here the existence of the banks called "autologous" that, for some authors, seem to contradict the principle of solidarity. This work will examine, amidst others, this question, and it will suggest a solution articulating both "liberty" and "solidarity". Other topics such as respect to confidentiality, informed consent and integrity of the body will be approached.

[Stem cells from cord blood: legal and ethical questions of transplantation and banking]. / Stammzellen aus Nabelschnurblut--Rechtliche und rechtsethische Fragen von Transplantation und Banking.

Transplantation and banking of stem cells from cord blood raise different legal and ethical questions. Who owns the cord blood? Does transplantation infringe the physical integrity of the neonate? And if so, who has to give her or his consent? In any case, legal representation by the neonate's guardians has to be guided by the "welfare of the child". Banking stem cells from cord blood may be private or public. Private banking causes difficulties concerning the right to health care and the issues of justice and equity. Public banking too raises complex legal issues, e.g. protection of potential recipients from life-threating illnesses at the one hand and the right of the donor to autonomy in disclosing information at the other.

Responding to the immunoglobulin shortage: a case study.

In fall 1997, a shortage of intravenous immunoglobulin (IVIG) developed in the United States because of increased demand for the product, reduced supply, and product recalls. This shortage is a useful model for understanding how our health care system responds to scarcity. Although the U.S. government took steps to inform the medical community of the shortage, with few exceptions, the government did not respond to the shortage in a timely or effective manner. Instead, it took a relatively passive role, leaving IVIG manufacturers and distributors, health care institutions, and clinicians to fend for themselves. The shortage likely had an uneven impact on patients, based on the relative market strength of the health care institutions in which they received care and the individual patient's ability to absorb the increasing out-of-pocket costs of scarce IVIG. Market mechanisms have now largely alleviated the shortage and significantly reduced its detrimental impact on patients. However, future shortages of IVIG or other scarce medical products, such as vaccines and antibiotics, would benefit from more immediate and coordinated efforts not only to make sure that scarce health care resources are distributed in a just manner but also to identify and remedy the sources of health product supply problems.