Faculty Bibliography

OBJECTIVE: To explore assisted reproductive technology (ART) programs' beliefs about and practices for screening program candidates for the use of ART services. DESIGN: An anonymous, self-administered, mailed questionnaire. SETTING: U.S. ART programs. PARTICIPANT(S): Directors of U.S. ART programs. MAIN OUTCOME MEASURE(S): Screening practices and beliefs, agreement with statements about screening rights and responsibility, information collected about candidates, and likelihood of turning away hypothetical candidates. RESULT(S): The majority of programs do not have a formal policy for screening candidates. The majority of program directors agree that they have a right and responsibility to screen candidates. On average, programs turn away 4% of candidates each year. The majority of programs report being very to extremely likely to deny treatment to the couples described in various scenarios, such as physical abuse, positive HIV status, and single parenthood. Significant variation was seen across programs in their likelihood of turning away various hypothetical candidates. CONCLUSION(S): There is substantial variation in ART programs' screening practices. These results highlight the need for increased debate over what constitutes inappropriate denial of access to services, and what are prudent, social, ethical, and medical judgments.

Kidney transplantation is a superior treatment strategy than chronic dialysis for end-stage renal disease patients. However, there is a severe shortage of cadaveric kidneys that are available for transplantation. Therefore many patients are turning to living donors. We describe four models of incentives to improve rates of living kidney donation: the market compensation model, the fixed compensation model, no-compensation model and the expense reimbursement model. We discuss the advantages and disadvantages of each of these models. Any incentive to improve rates of living kidney donation must be accompanied by safeguards. These safeguards will prevent living donors from being viewed primarily as a resource for transplants. These safeguards will also prevent vulnerable individuals from being coerced into donation and will monitor long-term outcomes of donors using a donor registry. We recommend the use of the expense reimbursement model along with these safeguards, in order to increase rates of living kidney donation.

In December 2002, a conference was held in Philadelphia to discuss public concerns about living organ transplantation with the goal of reaching a consensus about new strategies for such transplants. The conference was hosted by the Hospital of the University of Pennsylvania and the Center for Bioethics. A multidisciplinary group of leading experts and stakeholders was called to assess the current status of living donation and suggest productive changes to ensure safer and more ethically sound procedures for both donors and recipients. Prior to the meeting, the research team from the University of Pennsylvania, Center for Bioethics, conducted literature reviews and extensive background research on living organ transplantation. Summary briefs were prepared for all conference participants. Issues were divided into four subcategories; two or three experts led the discussion on each topic. At the conclusion of the conference, the points raised were summarized and discussed, and additional comments were offered before general agreement was reached on each subject. Transcribed minutes and summary statements were reviewed and circulated among participants to allow for additional comments and clarification. All feedback was incorporated into the statement, and a draft of the article was recirculated. Participants who have endorsed the following statements have agreed that these points represent the intent and spirit of the discussion, yet each participant reserves the right to disclaim the document in its entirety. The views represented in the consensus points are held by members of the consensus group and do not necessarily represent the views of the sponsor. A consensus was reached to propose new strategies and make improvements on existing practices and protocols. Specific attention was paid to the widely accepted needs of consistent and responsible communication with the public and press, standardization in donor assessment, a national living donor registry and new research focusing on larger sample numbers and long-term donor follow-up. These consensus points support the work carried out by other advisory transplant organizations and should assist in advocating for living organ donors, the live donor transplant process and the concerns of the public.

Improvement in policy for the management of scientific misconduct has been slow. While assurance of due process at the ORI level is now in place, similar protections at the institutional level and institutional responsibility for further oversight and a workplace where the responsible conduct of research can be practiced have not yet been addressed. In contrast, policy regarding human subject protection has evolved rapidly to reflect firmer norms, with decisive priority given to subject protection over scientific or social needs. Perhaps because scientific misconduct policy has the potential to harm the careers of individual scientists and harms to individual subjects are thought to be indirect, the scientific community has been successful in blocking every move toward testing more rigorous regulation. The mantras that scientists can discipline their own, and the price of competitive science is some level of scientific misconduct are not persuasive. The standards by which science is judged should not be an exception to those governing others who deal with the public's money and have a duty to the public interest.

It is making over its state Medicaid program known as TennCare. If this program gets implemented, many of the poor, elderly, children and disabled in Tennessee who rely on Medicaid will be told simply to get over it. And other hard-pressed states may well follow suit