Many inherited metabolic diseases may lead to varying degrees of brain damage and thus also to intellectual disability. Bone marrow transplantation (BMT) has been used for over two decades as a form of secondary prevention to stop or reverse the progress of the disease process in some of these conditions. At the population level the impact of BMT on the prevalence of intellectual disability is minute, but at the individual level its impact on the prognosis of the (...) disease and the well-being of the patient can be substantial. The dark side of BMT use is the burden of side effects, complications and transplantation-related mortality in less successful cases. The ethical issues involved in this therapy are discussed in this review. (shrink)

Tissue typing (TT) is a recent and controversial scientific advance. Whilst its current applications can easily be described as protherapeutic and within the realms of preventative medicine,1 its specificity and potential are often characterized as the tip of the eugenic iceberg: undermining the very basis of individual autonomy and identity in an inevitable march towards the perfect society:2 In addition to arguments concerning societal harms flowing from TT, significant concerns have also been raised concerning harms to the future child born (...) as a result. In the context of current legislation and policy, this article examines two aspects of arguments concerning harm to the future child: those relating to psychological harms, and those arguing that TT is contrary to the future child’s best interests.3The article examines the moral basis for arguments concerning harm to the future child. It proposes that arguments concerning psychological harm may overlook or minimise the potential benefits flowing from the broader social, familial context into which the child is born. These arguments may be countered, or at least balanced, by considering the future child in this context. In relation to arguments that TT is contrary to the future child’s best interests, the paper examines a non-standard consideration of best interests. It argues that this standard should be used in considering whether or not TT for bone marrow transplant is harmful to the future child, thereby extending moral consideration of interests to intra-familial interests and outcomes. On this basis, it can be argued that TT is not contrary to the interests of the future child. The paper concludes by noting a potential tension between the first guiding principle of the Infertility Treatment Act 1995 (Vic) and the current Victorian policy on TT. (shrink)

The influence of physician judgment on the disclosure, competency, understanding, voluntariness, and decision aspects of informed consent for bone marrow transplantation are described. Ethical conflicts which arise from the amount and complexity of the information to be disclosed and from the barriers of limited time, patient anxiety and lack of prior relationship between patient and physician are discussed. The role of the referring physician in the decision-making is considered. Special ethical issues which arise with use of healthy (...) related bone marrow donors are discussed, as is the physician's discretion in raising questions of competency. It is concluded that in this setting, regardless of the theoretical goals of the physician, patients appear to utilize informed consent discussions to assess their capacity to trust the physician rather than as a time to weigh the large amount of relevant data. The conscientious physician best serves the patient with recommendation of the best medical alternative rather than with attempts to remain neutral. (shrink)

The theoretical rationale was the author’s Functional Model of Health, where health is construed as a function of creative coping with stress. Participants in the study were 141 patients with blood cancer treated with bone marrow transplantation at the Hematology Clinic, Jagiellonian University Collegium Medicum. Besides a standardized interview the following instruments were used: STAI by Spielberger, CISS and CHIP by Endler and Parker, and SOC-29 by Antonovsky. Health status was operationalized using 10-point self-rating scales to assess (...) the patients’ perceived health and sense of calmness, while their objective health was rated by a medical expert - hematologist. In the statistical analyses significant correlations were found between stress level and the patients’ subjective health. The following variables predicted stress intensity: anxious personality, distraction coping strategy, female sex, and sense of meaningfulness. Subjective health predictors of leukemia patients are: objective health, level of stress, by the patient’s sense of meaningfulness and focusing on negative emotions. To promote patients’ health moreover, their sense of meaningfulness in life and in being active should be supported and enhanced. (shrink)

Volume 19, Issue 11, November 2019, Page 39-41.

Haematopoietic stem cell transplantation is a treatment modality that saves the health and lives of a growing number of patients around the world. In the majority of cases, the procedure is conducted to treat haematologic neoplasms, although it can also be used as a therapy for some non-haematooncological diseases. The progress that has been taking place in the field of haematopoietic stem cell transplantation involves the need for recruiting more and more potential unrelated bone marrow donors (...) for allotransplantation. In Poland, the number of people registering as potential bone marrow donors has been continuously growing and in order to maintain this trend, it is necessary, above all, to consistently spread the noble idea of bone marrow donation and to raise Poles’ awareness and knowledge about haematopoietic stem cell transplantation. Unfortunately, the situation caused by the severe acute respiratory syndrome coronavirus 2 pandemic limited the opportunities to act in public space and, as a consequence, it has become more difficult to achieve the objectives associated with recruiting new potential donors. The article provides a presentation of ethical and practical aspects associated with bone marrow donations as well as an overview of the legal situation concerning bone marrow donating and transplantation in Poland. The purpose of the paper is to also present some of the changes in transplantation procedures that have emerged as a consequence of the current epidemiological situation. The authors would like to emphasize the importance and the rightfulness of taking action that enables further development of transplantology. (shrink)

The article analyses practices, perceptions and political dramatizations of bone marrow donation in Cyprus. Based on empirical data from an ethnographic study on practices of organ and bone marrow transplantation in postcolonial Cyprus, forms of oppositional biopolitics are analysed that are not bound by the modern, étatist regime of governing populations but capitalize on new developments in biomedicine, on new political movements, as well as on transformations in the political sphere. These reconfigurations are interpreted as (...) instances of an emerging bio-subpolitics that transcends national borders and produces new complexities, interrelations, associations and social forms that come into being alongside biomedicine. At the same time, these developments co-produce cosmopolitan citizens and new subjectivities, transcending nationally bound regimes of political deliberation and identification. These forms of biopolitics mobilize local historical experiences and take advantage of affordances provided by biomedical platforms operating on a global scale that make available an opportunity structure for a cosmopolitan bio-subpolitics. (shrink)

The only hope of survival for children with a number of life-threatening illnesses is a successful bone marrow transplant (BMT). Unlike the treatment source for most therapies, the raw material for transplant therapy comes from a human being. Although, many BMTs are autologous, utilizing the patient's own bone marrow, a large percentage of childhood BMTs rely on bone marrow from children or adolescents who are biological siblings to the sick child. Medical and legal systems (...) are confronted with a dilemma when healthy children are needed to undergo minimally risky, yet somewhat painful, procedures for the benefit of their critically ill siblings. This article reviews legal issues involved in sibling bone marrow donation and psychological research that is relevant to those issues. The article concludes with proposed directions for future psycholegal research and a discussion of ethical issues that are not amenable to empirical investigation. (shrink)

The child was 2 years, 8 months old and weighed 25 pounds, one-fifth the weight of her mother, for whom she was to be the bone marrow donor. The mother had suffered a relapse of acute myelogenous leukemia; her physicians recommended a bone marrow transplant. The child was the closest human leukocyte antigen match and thus the best donor candidate for her mother's transplant.

In Nepal, live donor organ transplantation is only 14 years old with the first successful kidney transplant made in 2008 and a successful liver and bone marrow transplant made in 2016. However, transplantation of cadaveric cornea dates back to 1998. There are still no cases of animal-to-human organ transplantation in Nepal. There are stringent laws to regulate human body organ transplantation in Nepal which are amended from time to time. However, there is a racket (...) of human traffickers who lure rural people from this low-income country into the illegal organ trade. Furthermore, there is a substantial lack of awareness of organ donation among the general public. This article focuses on the stipulations of ethical, legal, and practical issues of obtaining organs procured from living and brain-dead donors that support the process of transplantation in Nepal. In addition, the article also explores the legal and practical issues of organ trafficking and organ donation awareness in Nepal on the basis of factual data and findings from other studies. (shrink)

In 1999, a case was described on national television in which a woman had enlisted onto an international bone marrow registry with the altruistic desire to offer her bone marrow to some unidentified individual in need of a transplant. The potential donor then was notified that she was a compatible match with someone dying from leukemia and gladly donated her marrow, which cured the recipient of the disease. Years later, though, the recipient developed end-stage renal (...) disease, a consequence of the high-dose chemotherapy she received earlier to destroy her stem cells and prepare her for the bone marrow transplant. Finding a suitable donor for a kidney transplant proved extremely difficult. Desperate, she requested that the donor registry personnel help her locate the individual who earlier was determined to be a compatible donor and asked this now-identifiable individual to consider donating one of her two normally functioning kidneys for a kidney transplant. (shrink)

Organ transplantation from living related donors in Bangladesh first began in October 1982, and became commonplace in 1988. Cornea transplantation from posthumous donors began in 1984 and living related liver and bone marrow donor transplantation began in 2010 and 2014 respectively. The Human Organ Transplantation Act officially came into effect in Bangladesh on 13th April 1999, allowing organ donation from both brain-dead and related living donors for transplantation. Before the legislation, religious leaders issued (...) fatwa, or religious rulings, in favor of organ transplantation. The Act was amended by the Parliament on 8th January, 2018 with the changes coming into effect shortly afterwards on 28th January. However, aside from a few posthumous corneal donations, transplantation of vital organs, such as the kidney, liver, heart, pancreas, and other body parts or organs from deceased donors, has remained absent in Bangladesh. The major question addressed in this article is why the transplantation of vital organs from deceased donors is absent in Bangladesh. In addition to the collection of secondary documents, interviews were conducted with senior transplant physicians, patients and their relatives, and the public, to learn about posthumous organ donation for transplantation. Interviews were also conducted with a medical student and two grief counselors to understand the process of counseling the families and obtaining consent to obtain posthumous cornea donations from brain-dead patients. An interview was conducted with a professional anatomist to understand the processes behind body donation for the purposes of medical study and research. Their narrative reveals that transplant physicians may be reticent to declare brain death as the stipulations of the 1999 act were unclear and vague. This study finds that Bangladeshis have strong family ties and experience anxiety around permitting separating body parts of dead relatives for organ donation for transplantation, or donating the dead body for medical study and research purposes. Posthumous organ donation for transplantation is commonly viewed as a wrong deed from a religious point of view. Religious scholars who have been consulted by the government have approved posthumous organ donation for transplantation on the grounds of necessity to save lives even though violating the human body is generally forbidden in Islam. An assessment of the dynamics of biomedicine, religion and culture leads to the conclusion that barriers to posthumous organ donation for transplantation that are perceived to be religious may actually stem from cultural attitudes. The interplay of faith, belief, religion, social norms, rituals and wider cultural attitudes with biomedicine and posthumous organ donation and transplantation is very complex. Although overcoming the barriers to organ donation for transplantation is challenging, initiation of transplantation of vital organs from deceased donors is necessary within Bangladesh. This will ensure improved healthcare outcomes, prevent poor people from being coerced into selling their organs to rich recipients, and protect the solidarity and progeny of Bangladeshi families. (shrink)

The stipulation of living organ transplantation policy and practice in Bangladesh is family-oriented, with relatives being the only people legally eligible to donate organs. There have been very few transplantations of bone marrows, liver lobes, and kidneys from related-living donors in Bangladesh. The major question addressed in this study is why Bangladesh is not getting adequate organs for transplantation. In this study, I examin the stipulations of the policy and practice of living organ donation through the lens (...) of 32 key stakeholders including physicians and nurses, a health administrator, organ donors and recipients, and their family members, as they can shed light on the realities and problems of organ donation for transplantation in Bangladesh. My ethnography reveals that the family members are always encouraged to donate organs for transplantation, and saving the lives of relatives through organ donation is seen as a moral obligation. Many view saving the life of a relative by donating one’s organs as equivalent to saving one’s own life. An assessment of the dynamics of biomedicine, religion, and culture leads to the conclusion that the family-oriented organ donation policy and practice have been widely endorsed and accepted in Bangladesh, and Islamic ethical principles and collective family ethos undergird that policy and practice. However, the unavailability of medical resources, lack of post-operative coverage for organ donors, religious misconceptions and unawareness of the general public, and the absence of posthumously donated vital organs for transplantation are perceived to be the most common barriers to a successful living donor-recipient pair organ transplantation. By overcoming these obstacles, Bangladesh can develop a successful living donor-recipient pair organ transplantation program that will ensure improved healthcare outcomes, promote altruism and solidarity among Bangladeshi families, and protect the poor from having their organs sold to wealthy patients. (shrink)

With an overall estimated 5-year survival rate of 67 percent, bone marrow transplant is a potential cure for patients with primary immune regulatory diseases. Given that Sa...

Hematopoietic stem cell transplantation is a widely accepted practice in the United Kingdom (UK). The relatively liberal UK law permits donation both within families and from strangers, and even allows the creation of “saviour siblings” who are brought into being with the specific intent of having them donate stem cells to save other members of their family. This chapter describes the regulation of HSCT in the UK and highlights some ethical issues related to discrimination against some categories of potential (...) donors, the accuracy of the information provided to potential donors, and the controversy concerning saviour siblings. (shrink)

The European Clinical Trials Directive (EU 2001; 2001/20/EC) was introduced to improve the efficiency of commercial and academic clinical trials. Concerns have been raised by interested organizations and institutions regarding the potential for negative impact of the Directive on non-commercial European clinical research. Interested researchers within the European Group for Blood and Marrow Transplantation (EBMT) were surveyed to determine whether researcher experiences confirmed this view. Following a pilot study, an internet-based questionnaire was distributed to individuals in key research (...) positions in the European haemopoietic SCT community. Seventy-one usable questionnaires were returned from participants in different EU member states. The results indicate that the perceived impact of the European Clinical Trials Directive has been negative, at least in the research areas of interest to the EBMT. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Institute of Medicine’s Report on Non-Heart-Beating Organ TransplantationRoger Herdman (bio), Tom L. Beauchamp (bio), and John T. Potts Jr. (bio)In December 1997, the Institute of Medicine (IOM) released a report on medical and ethical issues in the procurement of non-heart-beating organ donors. This report had been requested in May 1997 by the Department of Health and Human Services (DHHS). We will here describe the genesis of the IOM (...) report, the medical and moral concerns that led the DHHS to sponsor it, the process of producing it, and its conclusions. The analyses, findings, and recommendations of the report are also reviewed, in particular the central issues that led to suggestions for policy changes.Transplantation BackgroundAs a first step, some background in the relevant aspects of organ transplantation will prove useful. For the purposes of this analysis, “transplantation” involves the transfer of cells, tissues, or solid organs from one human to another to replace the structure or function of comparable body components that, through injury or disease, are defective or of inadequate function. The IOM report deals with solid organs, primarily kidneys and livers, whose blood supply is reconnected in the organ recipient, in contrast to cells, like bone marrow, and tissues, like corneas. A variety of donor types exists for organ transplantation, each with particular medical and scientific conditions.Living donors are healthy (and usually genetically related) individuals who volunteer to provide either a whole, paired organ such as a kidney or a section of an organ such as a liver. Cadaver donors are individuals who have died and from whom a full array of organs can be taken. “Heart-beating” cadaver donors are individuals who have suffered “brain death,” that is, irreversible cessation of function of the whole brain including the brain stem; and “non-heart-beating” donors (NHBDs) are individuals who are ill or injured, but not “brain dead,” and who have suffered cardiopulmonary death, that is, irreversible cessation of cardiac and respiratory function. NHBDs can be “controlled,” which means that [End Page 83] they can be sustained by artificial life support systems until a medical and family decision is made to terminate futile life support. This can be done at a scheduled time and in a controlled manner, and organs can then be recovered for transplantation. NHBDs can also be “uncontrolled,” which means that their hearts and breathing have stopped through disease or injury at an unexpected time or in an uncontrolled manner, and they cannot be resuscitated; the organs of some individuals of this description can be recovered for transplantation. The IOM report focused on both controlled and uncontrolled NHBDs and on problems specific to them.The questions that were asked and addressed in the IOM report became current and salient beginning in 1992 with the establishment of the University of Pittsburgh “Policy for the Management of Terminally Ill Patients Who May Become Organ Donors After Death.” This policy addressed controlled NHBDs and the ethical questions raised by their use; much of the discussion was reported in the June 1993 special issue of the Kennedy Institute of Ethics Journal. Public notice and anxiety about some of these concerns were sharpened and refocused by national and local media allegations of improper treatment of donors at the Cleveland Clinic in 1997, specifically premature—i.e., antemortem—recovery of organs and administration of drugs that allegedly might hasten donor death.The DHHS Request for StudyIt is not surprising that several federal actions would be taken in response to these events. Some, such as the results of a transplantation task force, remain largely internal to DHHS at this writing. Others are public, such as the IOM study of the NHBD situation. In May 1997, the DHHS initiated contacts with the IOM with the goal of exploring federal concerns about the medical and ethical treatment of NHBDs, in particular the allegations directed at the Cleveland Clinic.The DHHS response should be understood in at least three contexts. First, living donors and uncontrolled NHBDs were essentially the only donor types in the early days of transplantation in the United States. The technologies, ethics, and social acceptance of controlling and terminating life support for... (shrink)

Concerns are frequently raised about the extent to which formal consent procedures actually lead to “informed” consent. As part of a study of consent to high-risk medical procedures, we analyzed in-depth interviews with 16 health care professionals working in bone-marrow transplantation in Sydney, Australia. We find that these professionals recognize and act on their responsibility to inform and educate patients and that they expect patients to reciprocate these efforts by demonstrably engaging in the education process. This expectation (...) is largely implicit, however, and when it is not met, this can give rise to trouble that can have adverse consequences for patients, physicians, and relationships within the clinic. We revisit the concept of the sick role to formalize this new role expectation, and we argue that “informed” consent is a process that is usually incomplete, despite trappings and assumptions that help to create the illusion of completeness. (shrink)

Various cell types cooperate to create a highly organized and dynamic micro-environmental niche in the bone marrow. Over the past several years, the field has increasingly recognized the critical roles of the interplay between bone marrow environment and hematopoietic cells in normal and deranged hematopoiesis. These advances rely on several new technologies that have allowed us to characterize the identity and roles of these niches in great detail. Here, we review the progress of the last several (...) years, list some of the outstanding questions in the field and propose ways to target the diseased environment to better treat hematologic diseases. Understanding the extrinsic regulation by the niche will help boost hematopoiesis for regenerative medicine. Based on natural development of hematologic malignancies, we propose that combinatory targeting the niche and hematopoietic intrinsic mechanisms in early stages of hematopoietic malignancies may help eliminate minimal residual disease and have the highest efficacy. The bone marrow is the home for blood-forming hematopoietic stem and progenitor cells. Normal generation of blood and immune cells depends on highly regulated interactions between these stem and progenitor cells with their surrounding environment. Emerging evidence suggests that therapeutic interventions directed at these cellular interdependencies can help boost hematopoiesis and eradicate malignant hematopoietic cells. (shrink)

South Africa, like many other countries that have suffered through the brutality of colonisation and later apartheid, continues to grapple with ways of healing the scars that remain visible in its citizens’ bodies and psyches. These scars are both literal and figurative, and the impact thereof is felt daily, as people try to find ways of navigating the now-‘democratised’ and ‘liberated’ country. There is a persistent restlessness, as structural violence continues to affect members of society – especially those on the (...) margins, struggling for survival each day. In her book, Reweaving the Soul of the Nation, Mmatshilo Motsei offers insights into ways of imagining the possibilities of reweaving people’s broken souls. Using Motsei’s reflections as a compass, this article offers insights into the challenges of colonialism and spirituality, and interrogates the complexities of what education means. The article concludes by proposing ways of moving towards the possibility of healing our wounded souls. Contribution: This contribution forms part of the ‘VukaniBantuTsohangBatho collection on the Spirituality of Black Liberation’ and aims at honoring and celebrating the life and scholarly contributions of Vuyani Vellem. This article responds to the call by highlighting the role of spirituality in the reimagining of African lives and experiences. (shrink)

How can health plans make fair determinations about when “experimental” (and costly) treatments such as high dose chemotherapy with autologous bone marrow transplantation should be covered despite lack of clear clinical consensus about their benefits? Different models for managing “last chance” therapies evolving in some health plans offer promising examples of how issues of fairness and legitimacy in decisionmaking can be addressed.

We report on the case of a 2-year-old female, the youngest person ever to undergo ovarian tissue cryopreservation (OTC). This patient was diagnosed with a rare form of sickle cell disease, which required a bone-marrow transplant, and late effects included high risk of future infertility or complete sterility. Ethical concerns are raised, as the patient's mother made the decision for OTC on the patient's behalf with the intention that this would secure the option of biological childbearing in the (...) future. Based on Beauchamp and Childress's principlism approach of respect for autonomy, nonmaleficence, beneficence, and justice, pursing OTC was ethically justified. (shrink)

This academic paper on Ethical issues of using umbilical cord blood stem cell therapy of John Stuart Mill perspective aim to investigate the new approaches in the treatment of diseases by using umbilical cord blood stem cells. And also to study ethical issues from the use of umbilical cord blood stem cells in the treatment of diseases considered by Mill’s utilitarianism. 21st century, the medical industry was interested in organ transplantation from stem cells especially stem cells from the umbilical (...) cord to treat chronic and degenerative organ diseases, blood cancer and organ transplantation which successful and widespread throughout the world. Thailand has about 900 new children with Leukemia every year. About 50 percent are leukemia which needs to be treated correctly and urgently. In general Standardized chemotherapy but if the cancer patient has a bad prognosis Or have recurrent cancer Patients need to be treated with bone marrow transplants or stem cells to have a chance to heal. According to Mill’s Utilitarianism, the ethical concepts that determine what is the basic criterion used to determine whether it should or should not concern with the popular benefit that the criterion used is the amount of happiness that results from actions. Treating the disease using stem cells will make the patient recover from the disease, healthier and happier in life. As Mill said "The correctness of an action depends on the tendency that the action will lead to happiness. (shrink)

Imagine that you are a teenager and have cancer. You undergo a year of chemotherapy and after a brief return to normal life, you have a relapse. Your physician says that chemotherapy and radiation therapy could be tried, but a bone marrow transplant is your only chance of a real cure. He tells you and your parents that you could die as a result of complications from the transplant, but without it you would only be expected to live (...) one year. You and your family discuss the alternatives and decide to have the transplant. You ask what will happen if the BMT fails, but both your physician and your family tell you that right now you must fight to get better and not think negative thoughts. You do not ask any more questions. (shrink)

Increasingly, the world seems to shrink due to our ever-expanding technological and communication capacities. Correspondingly, our awareness of other cultures increases. This is especially true in the field of bioethics because the technological progress of medicine throughout the world is causing dramatic and challenging intersections with traditionally held values. Think of the use of pregnancy monitoring technologies like ultrasound to abort fetuses of the “wrong” sex in India, the sale of human organs in and between countries, or the disjunction between (...) the haves and the have-nots in South America when it comes to bone marrow transplants, while thousands of other children die for want of fundamental goods and services like clean water, basic inoculations, and food itself. (shrink)

Increasingly, the world seems to shrink due to our ever-expanding technological and communication capacities. Correspondingly, our awareness of other cultures increases. This is especially true in the field of bioethics because the technological progress of medicine throughout the world is causing dramatic and challenging intersections with traditionally held values. Think of the use of pregnancy monitoring technologies like ultrasound to abort fetuses of the “wrong” sex in India, the sale of human organs in and between countries, or the disjunction between (...) the haves and the have-nots in South America when it comes to bone marrow transplants, while thousands of other children die for want of fundamental goods and services like clean water, basic inoculations, and food itself. (shrink)

Bone marrow is the main site for hematopoiesis in adults. It acts as a niche for hematopoietic stem cells (HSCs) and contains non‐hematopoietic cells that contribute to stem cell dormancy, quiescence, self‐renewal, and differentiation. HSC also exist in resting spleen of several species, although their contribution to hematopoiesis under steady‐state conditions is unknown. The spleen can however undergo extramedullary hematopoiesis (EMH) triggered by physiological stress or disease. With the loss of bone marrow niches in aging and (...) disease, the spleen as an alternative tissue site for hematopoiesis is an important consideration for future therapy, particularly during HSC transplantation. In terms of harnessing the spleen as a site for hematopoiesis, here the remarkable regenerative capacity of the spleen is considered with a view to forming additional or ectopic spleen tissue through cell engraftment. Studies in mice indicate the potential for such grafts to support the influx of hematopoietic cells leading to the development of normal spleen architecture. An important goal will be the formation of functional ectopic spleen tissue as an aid to hematopoietic recovery following clinical treatments that impact bone marrow. For example, expansion or replacement of niches could be considered where myeloablation ahead of HSC transplantation compromises treatment outcomes. (shrink)

Fanconi anaemia (FA) comprises a group of autosomal recessive disorders resulting from mutations in one of eight genes (FANCA, FANCB, FANCC, FANCD1, FANCD2, FANCE, FANCF and FANCG). Although caused by relatively simple mutations, the disease shows a complex phenotype, with a variety of features including developmental abnormalities and ultimately severe anaemia and/or leukemia leading to death in the mid teens. Since 1992 all but two of the genes have been identified, and molecular analysis of their products has revealed a complex (...) mode of action. Many of the proteins form a nuclear multisubunit complex that appears to be involved in the repair of double‐strand DNA breaks. Additionally, at least one of the proteins, FANCC, influences apoptotic pathways in response to oxidative damage. Further analysis of the FANC proteins will provide vital information on normal cell responses to damage and allow therapeutic strategies to be developed that will hopefully supplant bone marrow transplantation. BioEssays 24:439–448, 2002. © 2002 Wiley Periodicals, Inc. (shrink)

Imagine that you are a teenager and have cancer. You undergo a year of chemotherapy and after a brief return to normal life, you have a relapse. Your physician says that chemotherapy and radiation therapy could be tried, but a bone marrow transplant is your only chance of a real cure. He tells you and your parents that you could die as a result of complications from the transplant, but without it you would only be expected to live (...) one year. You and your family discuss the alternatives and decide to have the transplant. You ask what will happen if the BMT fails, but both your physician and your family tell you that right now you must fight to get better and not think negative thoughts. You do not ask any more questions. (shrink)

D.T. a 35-year-old woman, was found to have breast cancer. At the time of mastectomy axillary lymph nodes were positive and the cancer was classified as adenocarcinoma, grade 4. The patient underwent conventional chemotherapy. When it became apparent the disease was metastatic, the patient's oncologist contacted a well-known cancer center regarding the possibility of treating the patient with high dose chemotherapy and autologous bone marrow transplantation. The patient's health insurance provider informed the patient, however, that the treatment—estimated (...) to cost in the range of $150,000–200,000—was “considered experimental or research in nature” and therefore was not included in coverage. D.T. did not pursue this further. Approximately 2 years later, cancer was detected in the patient's spine. This time she applied to another well-known cancer center for HDC/ABMT. The cancer center agreed to accept her on the condition of proof of ability to pay for the treatment. Again her insurer refused coverage on the same grounds as before. D.T. found another source for the money, underwent treatment, then sued the insurance carrier. She sought a declaratory judgment that the treatment was covered under the insurance policy. The court ruled in favor of D.T. finding the contract phrase “considered experimental” ambiguous. (shrink)

A notable feature of the COVID-19 pandemic is that children are less at risk of becoming infected or, if infected, less likely to become seriously unwell, so ethical discussions have consequently focused on the adult healthcare setting. However, despite a lower risk of children becoming acutely ill with COVID-19, there nevertheless may be significant and potentially sustained effects of COVID-19 on the physical, psychological, and emotional health and well-being of children. Focusing on the context of children’s cancer care, and specifically (...) bone marrow transplant, we describe some of these effects and then address one specific ethical challenge that arises. That is the question of what and how much to tell children whose cancer treatment has been changed because of COVID-19. Drawing on our previous work on the ethical reasons for telling the truth to younger children we link different ethical reasons to the different types of information that could be given to children in this context. We argue that children should be given an explanation of the changes that they will directly experience, including some changes to the process of their actual medical treatment; but not about increased risk associated with these changes, unless they specifically ask for this information. (shrink)

Several prominent cases have recently highlighted tension between the interests of individuals and those of the broader population in gaining access to health care resources. The care of Helga Wanglie, an elderly woman whose family insisted on continuing life support long after she had lapsed into a persistent vegetative state, cost approximately $750,000, the majority of which was paid by a Medi-gap policy purchased from a health maintenance organization. Similarly, Baby K was an anencephalic infant whose mother, believing that all (...) life is precious regardless of its quality, insisted that the hospital where her daughter was born provide mechanical ventilation, including intensive care, whenever respiratory distress threatened her life. Over the hospital's objections, courts ruled that aggressive care must be provided. Much of Baby K's care was covered by her mother's HMO policy. In the 1993 case of Fox v. HealthNet, a jury awarded $89 million to the family of a woman whose HMO had refused, as experimental, coverage for autologous bone marrow transplant in treating her advanced breast cancer. (shrink)

Several prominent cases have recently highlighted tension between the interests of individuals and those of the broader population in gaining access to health care resources. The care of Helga Wanglie, an elderly woman whose family insisted on continuing life support long after she had lapsed into a persistent vegetative state, cost approximately $750,000, the majority of which was paid by a Medi-gap policy purchased from a health maintenance organization. Similarly, Baby K was an anencephalic infant whose mother, believing that all (...) life is precious regardless of its quality, insisted that the hospital where her daughter was born provide mechanical ventilation, including intensive care, whenever respiratory distress threatened her life. Over the hospital's objections, courts ruled that aggressive care must be provided. Much of Baby K's care was covered by her mother's HMO policy. In the 1993 case of Fox v. HealthNet, a jury awarded $89 million to the family of a woman whose HMO had refused, as experimental, coverage for autologous bone marrow transplant in treating her advanced breast cancer. (shrink)

Mucopolysaccharidosis type I (MPS I) is a rare lysosomal storage disorder treated with bone marrow transplantation or enzyme replacement therapy with laronidase, a high-cost orphan drug. Laronidase was approved by the US Food and Drug Administration and the European Medicines Agency in 2003 and by the Brazilian National Health Surveillance Agency in 2005. Many Brazilian MPS I patients have been receiving laronidase despite the absence of a governmental policy regulating access to the drug. Epidemiological and treatment data (...) concerning MPS I are scarce. This study aims to present a demographic profile of Brazilian patients with MPS I, describe the routes of access to laronidase in Brazil, and discuss associated ethical issues relating to public funding of orphan drugs. (shrink)

“Big ticket” items in medicine pose a moral puzzle. We can call it the “Coby Howard puzzle,” after the boy whose need for an expensive bone marrow transplant forced Oregonians to reassess their policy of prohibiting this and other expensive “big ticket” procedures in favor of more low-tech, apparently cost-efficient interventions. The Oregon rationing debate was stimulated by the concern that expenditures on “big ticket” medical treatments for life-threatening disease were coming at the expense of low-tech, preventive “basic” (...) care like immunizations, wellbaby clinics, and prenatal care.Another recent example was the public controversy over expenditures of over $1,800 per day on a project to try to separate Siamese twins conjoined at the heart. The physicians, prior to the procedure, claimed there was a one percent chance of success. It was reported that 50,000 children in Philadelphia could be immunized at the cost of that innovative therapy. Cost-benefit analysis suggests that much greater good would be done in the long run if we ignored the expensive, long-shot, high-risk projects and focused on basic medical needs. (shrink)

“Big ticket” items in medicine pose a moral puzzle. We can call it the “Coby Howard puzzle,” after the boy whose need for an expensive bone marrow transplant forced Oregonians to reassess their policy of prohibiting this and other expensive “big ticket” procedures in favor of more low-tech, apparently cost-efficient interventions. The Oregon rationing debate was stimulated by the concern that expenditures on “big ticket” medical treatments for life-threatening disease were coming at the expense of low-tech, preventive “basic” (...) care like immunizations, wellbaby clinics, and prenatal care.Another recent example was the public controversy over expenditures of over $1,800 per day on a project to try to separate Siamese twins conjoined at the heart. The physicians, prior to the procedure, claimed there was a one percent chance of success. It was reported that 50,000 children in Philadelphia could be immunized at the cost of that innovative therapy. Cost-benefit analysis suggests that much greater good would be done in the long run if we ignored the expensive, long-shot, high-risk projects and focused on basic medical needs. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:How I Lost My HearingJanessa SalesI was born as a healthy and strong hearing person, but I became deaf through a result of painful and traumatic cancer treatments. I was diagnosed with a malignant brain tumor called Germinoma in 2003. I went through surgery, chemotherapy, and radiation. I was good for one and a half years. However, in 2005 when I turned 12 my cancer relapsed. My doctors told (...) me and my family that I had to undergo a much stronger treatment plan called a Bone Marrow Transplant (BMT). One of the possible side effects to this treatment was hearing loss. I unfortunately received this devastating side effect.I still remember the day that I lost my hearing. Before going to sleep that night, I received a dose of chemo. Waking up the next morning, something was terribly wrong. I couldn’t hear anything! I felt as if I were wearing earplugs. I called for my mother and I told her the alarming news, but as she was speaking back to me, I strained to hear her voice. All I saw were her lips moving. My doctors made arrangements for me to get my hearing tested with an audiologist.As the days that passed, I went through a deep depression. My doctors and my family tried different ways to communicate with me. They used note pads or white boards and wrote down what they wanted to say to me. As my hearing lessened, my other senses kicked in. I read body language and expressions. I learned to read lips. It was a little over a month before I got my hearing aids.Going back to school was very difficult, but my hearing loss, in itself, wasn’t as traumatic as the refusal to accept my new life. I spent the next four years trying to be hearing—trying to fix myself— trying to be what I once was. I always strained my ears trying to listen to my teachers. I tried fitting in with my friends, trying to keep up with their conversations, but it was no use. I couldn’t hear a thing; I was lost and confused.However, during my eighth grade year, I was given the choice to transfer to a different school. It was a mainstream school that had a DHH (Deaf and Hard of Hearing) program. It was a scary transition going to a new school, not knowing anybody. I hesitated and did not want to go at first, but eventually I got over my fears.When I transferred over to the other middle school, I still felt lost. I was still trying to be a hearing student. I only knew how to be auditory learner. I couldn’t focus because I wasn’t able to hear my teachers. I was new at sign language, so I couldn’t understand any of my interpreters. I had frequent meltdowns every week.I felt like I didn’t fit into the deaf world or the hearing world. I couldn’t understand either one. I was always misunderstanding my hearing friends, and I wasn’t able to understand my deaf peers because I didn’t fully know their language. I had low self–esteem and I felt like I didn’t belong anywhere.I had to learn to become a visual learner. I was given the use of a Frequency Modulated (FM) system. The FM system is an assistive listening device worn by the speaker to amplify his/her voice and transmit it directly to the listener’s ears via an electronic receiver and special earphones or the listener’s own hearing aids. I also had an interpreter and closed captions when needed.My DHH teacher Mr. H, who was my greatest mentor and role model, set me up with an Individualized Educational Program (IEP) that required that I had to have my homework written down instead being verbally told. I was allowed to have more time on tests when needed, and a note taker for lectures. All of these arrangements really helped me through my new “deaf world.”My mother and I took Sign Language classes at Sacramento State University where Mr. H also taught... (shrink)

At the end of 1999 the Danish Council of Ethics published a report on organ and tissue donation from living donors. The report focused on kidney and bone marrow transplantations, as these are presently the most common transplantations from live donors. During the work on the report, it became clear to the Council that, apart from problems concerning coercion and commercialization that affected both adult and child donors, by far the largest ethical problems occurred in donations from children.

The prevalence of nonpaternity in human societies is difficult to establish. To obtain a current and fairly unbiased estimate of the nonpaternity rate in Germany, we analysed a dataset consisting of 971 children and their parents in whom human leukocyte antigen (HLA) typing had been carried out in the context of bone marrow transplantation. In this sample, nine exclusions (0.93%) could be identified on the basis of more than 300 HLA-haplotypes defined by four HLA genes. Given this (...) number of exclusions, a maximum likelihood estimate of the nonpaternity rate in the population of 0.94% was obtained with asymptotic 95% confidence limits of 0.33% and 1.55%, respectively. This result is in accordance with recent surveys as well as findings from Switzerland for a comparable sample, and it suggests that earlier estimates of the nonpaternity rate which were often in excess of 10% may have been largely exaggerated. (shrink)

In this paper we criticize the existing contradictions in the context of bone marrow donor records in Spain. On the one hand there is the necessity to register as many patients as possible to maximize the opportunities to access a bone marrow transplant and on the other the always important economic issue of having to perform the relevant histocompatibility tests. In fact, these records are globally coordinated with each other to provide a wide range of potential (...) donors and make better use of existing resources. It should be noted that many patients who should have a transplant but who do not achieve a sufficient donor support must follow a medical treatment with high economic costs with tragic results for many of them. For example, those suffering from certain types of leukemia, when not finding that compatible donor, must follow chemotherapy-based treatments. There are also cord blood units banks which allow performing these transplants, also coordinated at the international level. Therefore, according to the principle of reciprocity, it is not justifiable that some countries are doing an important economic effort to have a large registration while others take advantage without making an equivalent effort according to their economic and population size. (shrink)

When I started doing clinical ethics rounds, in the mid 1980s, I decided to venture onto the pediatrics ward. The first patient I encountered was a 3-year-old girl returning to her room, groggy from general anesthesia. When I inquired about her, the nurse explained that she had just gone through the procedure to donate bone marrow for her 1-year-old sister, who was preparing to undergo bone marrow transplantation for leukemia.