Supporting Stewardship: Funding, Utilization, and Sustainability as Ethical Concerns in Networked Biobanking.

Background: The literature on the ethics of biobanking often overlooks the practical operations of biobanks. The ethics of stewardship requires that biobank resources are used to conduct beneficial science. Networked biobanks have emerged to increase the scientific benefit of biobank resources, but little is known about whether and how operations of networking may accomplish this goal.

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.

Genomics and Newborn Screening: Perspectives of Public Health Programs.

This study assesses the benefits and challenges of using genomics in Newborn Screening Programs (NBS) from the perspectives of State program officials. This project aims to help programs develop policies that will aid in the integration of genomic technology. Discussion groups were conducted with the NBS Program and Laboratory Directors in the seven HRSA Regional Genomics Collaboratives (August 2014-March 2016).

Obstetrician-Gynecologists' Practices in Postpartum Sterilization Without a Valid Medicaid Consent Form.

Objective: To explore the practices of obstetrician-gynecologists (ob-gyns) in the United States surrounding postpartum sterilization when the Medicaid consent form was not valid.

Methods: Using the American College of Obstetricians and Gynecologists' online directory, we conducted a qualitative study where we recruited ob-gyns practicing in 10 geographically diverse U.S.

Variation by state in Medicaid sterilization policies for physician reimbursement.

Objective: To evaluate state-level variation in Medicaid sterilization reimbursement policies for physicians in terms of policy details, flexibility, and review process.

Study Design: We reviewed state Medicaid websites and interviewed state employees to better understand reimbursement policies and implementation. We attempted to obtain policy details and instructions for physicians from all 50 state Medicaid office websites.

Attitudes and beliefs of obstetricians-gynecologists regarding Medicaid postpartum sterilization - A qualitative study.

Objective: To explore the attitudes and beliefs of obstetrician-gynecologists in the United States (US) regarding the Medicaid postpartum sterilization policy.

Study Design: We recruited obstetrician-gynecologists practicing in ten geographically diverse US states for a qualitative study using the American College of Obstetricians and Gynecologists directory. We conducted semi-structured interviews via telephone, professionally transcribed, and analyzed using the constant comparative method and principles of grounded theory.

Perceptions and practice of state Medicaid officials regarding informed consent for female sterilization.

Objective: To explore the attitudes, beliefs, and interpretations of individual state Medicaid office employees regarding their state's postpartum sterilization policy and its impact on patient care.

Study Design: We invited employees in all 50 state Medicaid director's offices who self- or peer-identified as best informed about the sterilization policy to participate in semi-structured qualitative interviews. Using a pilot-tested interview guide, we transcribed, coded, and analyzed each interview.

Correction: Experiences and perspectives on the return of secondary findings among genetic epidemiologists.

In the original published version of Table 2 the number of respondents who said "No" to the question "Does your consent form distinguish between targeted and incidental findings?" was indicated as "4." It should have read "44." This has now been corrected in both the PDF and HTML versions of the Article.

Experiences and perspectives on the return of secondary findings among genetic epidemiologists.

Purpose: While there has been a recent increase in scholarship around developing policies for the return of results from genetic sequencing, it is not clear whether these approaches are appropriate for genetic epidemiology studies. Because genetic epidemiological research increasingly utilizes genome sequencing methods, particularly in large data sets where researchers did not directly ascertain the subjects, it is important to understand researchers' perspectives on the return of results.

Methods: We conducted an online survey of members of the International Genetic Epidemiology Society to document the diversity of experiences and impressions regarding return of results.

"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.

Are "anti-aging medicine" and "successful aging" two sides of the same coin? Views of anti-aging practitioners.

Objectives: This article analyzes data from interviews with anti-aging practitioners to evaluate how their descriptions of the work they do, their definitions of aging, and their goals for their patients intersect with gerontological views of "successful aging."

Method: Semistructured interviews were conducted with a sample of 31 anti-aging practitioners drawn from the directory of the American Academy for Anti-Aging Medicine.

Results: Qualitative analysis of the transcripts demonstrate that practitioners' descriptions of their goals, intentionally or unintentionally, mimic the dominant models of "successful aging.

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.

IRB perspectives on the return of individual results from genomic research.

Purpose: Return of individual research results from genomic studies is a hotly debated ethical issue in genomic research. However, the perspective of key stakeholders-institutional review board (IRB) professionals-has been missing from this dialogue. This study explores the positions and experiences of IRB members and staff regarding this issue.

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.

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.