Membership recruitment and training in health care ethics committees: Results from a national pilot survey.

This pilot study reports on a survey regarding recruitment, appointment, and training of members for health care ethics committees (HCECs). BACKGROUND: Past studies have examined HCECs, but have focused on the roles of the committees and the broad makeup of membership. Thus, our study fills an important knowledge gap in trends of membership recruitment and appointment processes employed by HCECs to comprise their membership. METHODS: We posted our survey on several bioethics listservs between June and August 2015. Of the 103 respondents that started the survey, 59 were eligible for inclusion based on our criteria. We analyzed survey results descriptively and qualitatively. RESULTS: Overall we found no unifying standards of recruitment or appointment across the 59 respondents. Additionally, while responding committees varied in the professional backgrounds and attributes they valued in potential members, we found that most respondents valued traits of the applicants over specific knowledge or skills. CONCLUSIONS: This study provides a first look into how HCECs recruit members. Future research is needed to better understand the complexities of the issues discovered during this study, given that the HCEC members appointed are the individuals who fulfill committee obligations.

Genomic research with the newly dead: a crossroads for ethics and policy.

Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical and research practices. In addressing the ethical and policy issues raised by a particular research project within our institution comparatively with these other practices, we illustrate the moral significance of paying careful heed to where one looks for guidance in responding to ethical questions raised by a novel endeavor.

Biobanks in the United States: how to identify an undefined and rapidly evolving population.

As part of a larger organizational study, we sought to survey biobanks in the United States. However, we encountered two problems with this population. First, no common definition of biobanks exists. Second, no census is available of these facilities from which to sample in order to implement a survey. In light of these problems, we employed a multifaceted approach using electronic searches of PubMed, RePORTER, and Google. In addition, we systematically searched for biobanks housed within universities that have NIH-designated Clinical and Translational Science Awards (CTSA). We expanded this part of the search by looking for biobanks among all members of the American Association of Medical Colleges (AAMC). Finally, we added banks to our database found previously by other researchers and banks found via correspondence with our colleagues. Our search strategy produced a database of 624 biobanks for which we were able to confirm contact information in order to conduct our online survey. Another 140 biobanks were identified but did not respond to our requests to confirm their existence or contact information. In order to maximize both the uniqueness of banks found and the greatest return on effort for each search, we suggest targeting resources that are already organized. In our work, these included the CTSA, AAMC, and part of the Google searches. We contend that our search provides a model for analysis of new fields of research and/or rapidly evolving industries. Furthermore, our approach demonstrates that with the appropriate tools it is possible to develop a systematic and comprehensive database to investigate undefined populations.