Alon B. Neidich

Empirical data about women's attitudes towards a hypothetical pediatric biobank.

Researchers at the University of Chicago sought institutional review board (IRB) approval to establish both an obstetrical biobank (Chicago Lying‐in Pregnancy Program [CLIPP]) and a pediatric biobank (KidsGene). Before KidsGene was approved, the IRB requested additional ethical review. The research ethics consultation service noted that no empirical data existed about parental attitudes towards this type of project. Postpartum women 18 years or older who delivered at the University of Chicago Hospitals and had live infants on the General Care Nursery service were approached about participating in a survey about the CLIPP biobank and about a hypothetical pediatric biobank. Two hundred thirty‐nine women were consented and completed most or all of the survey. Eighty‐two percent self‐classified as Black and seven percent were Caucasians. Caucasians were the most willing to enroll their children hypothetically into a pediatric biobank with non‐Black minorities being the most uncertain about what they would do. Almost half of the women thought that the research had the main goal of advancing science although a similar number expressed the belief that the research had the main goal of helping their individual child. Women supported use of the samples for a wide array of pediatric conditions. Comprehension of research practices, trust in medical researchers, and a belief that the research findings would be used fairly correlated with enrollment. Our survey found that most women support biobank development for research purposes. Most respondents expressed optimism that the results will yield significant benefits and that the benefits will be distributed fairly.

The Ethical Complexities of Online Organ Solicitation via Donor–Patient Websites: Avoiding the “Beauty Contest”

The proliferation of the Internet has spurred the creation of websites dedicated to facilitating living directed organ donations. We argue that such sites potentially devolve into “beauty contests” where patients in need are evaluated on the basis of their personal appearance and biography—variables which should have no relevance to organ allocation. Altruism should be the guiding motivation for all donations, and when it does, there is no place for a beauty contest. The power of the Internet is optimally used when it facilitates Good Samaritan donations—donations to any stranger, rather than handpicked ones. Social networking sites which aim to match potential donors and patients should mask personal identifying information, allowing the ethical principles of altruism and justice to guide organ allocation.

Empirical Data About Women's Attitudes Toward a Biobank Focused on Pregnancy Outcomes

The Chicago Lying‐in Pregnancy Program (CLIPP) is a biobank designed to collect biological samples from pregnant women to study issues related to pregnancy. Despite the large number of biobanking initiatives in obstetric populations around the world, there is no published research that examines what pregnant women understand about enrollment into such programs and what their attitudes and beliefs are toward the research and its potential outcomes. Postpartum women 18 years or older who delivered at the University of Chicago Hospitals and had live infants on the General Care Nursery service were approached about participating in a survey about the CLIPP biobank and about a hypothetical pediatric biobank. Ninety‐three women who had been recruited to participate in CLIPP agreed to participate in this research. Sixty‐three women (68%) had previously agreed to participate in CLIPP; and 30 (32%) had refused. Both participants and non‐participants understood that CLIPP had the main goal of advancing science, although almost one‐half of the respondents thought that participation in CLIPP would benefit the individual participants. Eighty‐five (92%) correctly believed that the research team would keep the medical information private. There was widespread optimism that the research would yield significant results. Importantly, there was no difference in these beliefs between those who enrolled and those who did not enroll in CLIPP. While education and socioeconomic status correlated with greater understanding about the methods and goals of the program, greater understanding did not correlate with willingness to participate. Our survey found widespread willingness to enroll in a pregnancy‐focused biobank and optimism that the results will yield significant benefits.

Optimising the documentation practices of an Ethics Consultation Service

A formal Ethics Consultation Service (ECS) can provide significant help to patients, families and hospital staff. As with any other form of clinical consultation, documentation of the process and the advice rendered is very important. Upon review of the published consult documentation practices of other ECSs, we judged that none of them were sufficiently detailed or structured to meet the needs and purposes of a clinical ethics consultation. Thus, we decided to share our method in order to advance the practice of ethics consultation. Here, we describe a method of ECS documentation practice, including use of a formal consult report template, as well as a log for maintaining a chronological record of the consultations performed. These two documents facilitate order and organisation of the ECS. They also enable the ECS to keep an account of professional time and experience, enable quick consult trend assessments (by consult theme or ward, for example) and establish a potential registry of consults for future research study. This method of documentation, we believe, not only contributes significantly to the primary purpose of the consultation—namely, the evincing and sharing of ethical opinion about a case—but also enables consultants to improve their practice and to pursue research on clinical ethics consultation.

Novel Use of Intravenous Immunoglobulin G in Complement Factor H Missense Mutation: A Case Report:

A white girl presented at 8 months of age with thrombotic microangiopathy, followed by recurrent episodes of renal dysfunction, hemolysis, and thrombocytopenia, compatible with atypical hemolytic uremic syndrome. The episodes of the syndrome were treated by a combination of infusions of fresh frozen plasma, plasmapheresis, and continuous venovenous hemodialysis. Interval resolution occurred between episodes. At 2 years of age, prophylactic infusions of fresh frozen plasma were started between relapses, but this proved to be poorly protective; however, introduction of prophylactic intravenous gamma globulin at age 3.5 years resulted in prolonged remission (42 months). Serum levels of the third and fourth components of complement, total hemolytic complement, and complement factor H were normal. Results of the third component functional assay were low before and normalized after the start of immunoglobulin G prophylaxis. A missense mutation of complement factor H was identified. At 6 years of age, the patient underwent bilateral native nephrectomy and started long-term peritoneal dialysis, followed by a combined liver-kidney transplant at age 8 years. Four and a half years after transplant, she has excellent renal and liver graft function without recurrence of atypical hemolytic uremic syndrome.

Elective Transplantation for MMA Patients: How Ought Patients’ Needs for Organs to be Prioritized when Transplantation Is Not their Only Available Treatment?

Because transplantation for methylmalonic acidaemia prioritizes quality of life over long-term outcomes, justice and utility must be considered.

Consumerist Responses to Scarcity of Organs for Transplant

The consumerist response to scarcity of organs for transplant, in which those who can afford to do so list themselves in locations with more organs, substitutes socioeconomic inequity for geographic inequity.

The frontiers of organ transplantation: "Oh, the places we'll go".

Introduction to the March 2012 issue of Virtual Mentor on ethical issues in organ transplantation.

The promise of health information technology.

The addition of IT to our health care system should not be viewed as merely a technological upgrade, but rather a fundamental change in our approach to the practice of medicine. Virtual Mentor is a monthly bioethics journal published by the American Medical Association.