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. © 2008 Wiley‐Liss, Inc.
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.
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. Ninetythree 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. ß
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.
A clinical case is used to explore the ethical complexities of solid organ donation and transplantation within the Hmong community in the United States. Although many cultures can present various ethical issues, the challenges of the Hmong belief system are unique and distinctly complex. Ways for the medical team to integrate with the Hmong value system to attempt to create an environment of transcultural respect and appreciation are described.
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