Moving to the Middle Ground: Redefining Genomic Utility to Expand Understanding of Familial Benefit.

Translational research has tended to ignore the question of whether receiving a genomic diagnosis provides utility in community care contexts outside of doctors' offices and hospitals. However, empirical research with parents has highlighted numerous ways that a genomic diagnosis might be of practical value in the care provided by teachers, physical or occupational therapists, speech-language pathologists, behavior analysts, and nonphysician mental health providers. In this essay, we propose a new conceptual model of genomic utility that offers the opportunity to better capture a broad range of potential implications of genomic technologies for families in various social and organizational systems. We explore crucial research directions to better understand how redefined utility might affect families and nonphysician professionals.

US public cord blood banking practices: recruitment, donation, and the timing of consent.

BACKGROUND: Cord blood has moved rapidly from an experimental stem cell source to an accepted and important source of hematopoietic stem cells. There has been no comprehensive assessment of US public cord blood banking practices since the Institute of Medicine study in 2005. STUDY DESIGN AND METHODS: Of 34 US public cord blood banks identified, 16 participated in our qualitative survey of public cord blood banking practices. Participants took part in in-depth telephone interviews in which they were asked structured and open-ended questions regarding recruitment, donation, and the informed consent process at these banks. RESULTS: Thirteen of 16 participants reported a variably high percentage of women who consented to public cord blood donation. Fifteen banks offered donor registration at the time of hospital admission for labor and delivery. Seven obtained full informed consent and medical history during early labor and eight conducted some form of phased consent and/or phased medical screening and history. Nine participants identified initial selection of the collection site location as the chief mode by which they recruited minority donors. CONCLUSION: Since 2005, more public banks offer cord blood donor registration at the time of admission for labor and delivery. That and the targeted location of cord blood collection sites are the main methods used to increase access to donation and HLA diversity of banked units. Currently, the ability to collect and process donations, rather than donor willingness, is the major barrier to public cord blood banking.

"A rising tide lifts all boats": establishing a multidisciplinary genomic tumor board for breast cancer patients with advanced disease.

BACKGROUND: Research suggests that multidisciplinary genomic tumor boards (MGTB) can inform cancer patient care, though little is known about factors influencing how MGTBs interpret genomic test results, make recommendations, and perceive the utility of this approach. This study's objective was to observe, describe, and assess the establishment of the Breast Multidisciplinary Genomic Tumor Board, the first MGTB focused on interpreting genomic test results for breast cancer patients with advanced disease. METHODS: We conducted a qualitative case study involving participant observation at monthly MGTB meetings from October 2013 through November 2014 and interviews with 12 MGTB members. We analyzed social dynamics and interactions within the MGTB regarding interpretation of genomic findings and participants' views on effectiveness of the MGTB in using genomics to inform patient care. RESULTS: Twenty-two physicians, physician-scientists, basic scientists, bioethicists, and allied care professionals comprised the MGTB. The MGTB reviewed FoundationOne™ results for 40 metastatic breast cancer patients. Based on findings, the board mostly recommended referring patients to clinical trials (34) and medical genetics (15), and Food and Drug Administration-approved (FDA) breast cancer therapies (13). Though multidisciplinary, recommendations were driven by medical oncologists. Interviewees described providing more precise care recommendations and professional development as advantages and the limited actionability of genomic test results as a challenge for the MGTB. CONCLUSIONS: Findings suggest both feasibility and desirability of pooling professional expertise in genomically-guided breast cancer care and challenges to institutionalizing a Breast MGTB, specifically in promoting interdisciplinary contributions and managing limited actionability of genomic test results for patients with advanced disease.

Anti-aging medicine: can consumers be better protected?

The use of interventions claiming to prevent, retard, or reverse aging is proliferating. Some of these interventions can seriously harm older persons and aging baby boomers who consume them. Others that are merely ineffective may divert patients from participating in beneficial regimens and also cause them economic harm. "Free market regulation" does not seem to weed out risky, ineffective, and fraudulent anti-aging treatments and products. Public health messages, apparently, are having little effect. What more can be done to achieve better protection for older consumers? An analysis of the potential for federal and state action reveals many barriers to effective governmental regulation of anti-aging interventions. In view of dim prospects for stronger public regulation, physicians and other professionals--especially geriatricians and gerontologists--will need to be more aggressive in protecting older consumers. In particular, The Gerontological Society of America and the American Geriatrics Society should undertake a sustained program of specific educational efforts, directed at health professionals and the general public, in which they sort out as best they can the helpful, the harmful, the fraudulent, and the harmless anti-aging practices and products.

From the Lab to the Front Line: How Individual Biogerontologists Navigate their Contested Field.

This paper infuses a new perspective into scholarship on anti-aging science: the experiences of individual scientists as they entered and navigate this controversial field. We draw on in-depth interviews with 43 prominent biogerontologists to accomplish three objectives. First, we highlight key factors that draw scientists into biogerontology-especially the unique and complex puzzles posed by aging. Second, we examine how biogerontologists define themselves and their research in relation to "anti-aging" science-particularly how scientists distance themselves from the tarnished history of the field and employ powerful language to distinguish legitimate from illegitimate scholarship, and science from industry. Finally, we explore how individual scientists manage any social, religious, and ethical objections to conducting "anti-aging" research-and the repertoire of responses they use to simultaneously dismantle objections and reinforce the legitimacy of their science. The analyses reveal how much is ultimately at stake for these individual scientists on the front line.