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"Brower, Jamie"
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Research participants’ experiences with return of genetic research results and preferences for web‐based alternatives
2019
Background While there is increasing interest in sharing genetic research results with participants, how best to communicate the risks, benefits and limitations of research results remains unclear. Methods Participants who received genetic research results answered open and closed‐ended questions about their experiences receiving results and interest in and advantages and disadvantages of a web‐based alternative to genetic counseling. Results 107 BRCA1/2 negative women with a personal or family history of breast cancer consented to receive genetic research results and 82% completed survey items about their experience. Most participants reported there was nothing they disliked (74%) or would change (85%) about their predisclosure or disclosure session (78% and 89%). They most frequently reported liking the genetic counselor and learning new information. Only 24% and 26% would not be willing to complete predisclosure counseling or disclosure of results by a web‐based alternative, respectively. The most frequently reported advantages included convenience and reduced time. Disadvantages included not being able to ask questions, the risk of misunderstanding and the impersonal nature of the encounter. Conclusion Most participants receiving genetic research results report high satisfaction with telephone genetic counseling, but some may be willing to consider self‐directed web alternatives for both predisclosure genetic education and return of results. Return of genetic research results is an increasing area of interest and concern for participants and researchers. How best to share this information remains unknown. Analysis of open and closed‐ended survey questions about experiences, and expectations about receiving research results, indicate high satisfaction with traditional genetic counseling but also participant willingness to consider web alternatives to both pre‐disclosure genetic education and actual return of results.
Journal Article
Patient feedback and early outcome data with a novel tiered-binned model for multiplex breast cancer susceptibility testing
by
Domchek, Susan M.
,
Egleston, Brian L.
,
Bradbury, Angela R.
in
631/208/1516
,
692/699/67/1347
,
692/700/139/1512
2016
The risks, benefits, and utilities of multiplex panels for breast cancer susceptibility are unknown, and new counseling and informed consent models are needed. We sought to obtain patient feedback and early outcome data with a novel tiered-binned model for multiplex testing.
BRCA1/2-negative and untested patients completed pre- and posttest counseling and surveys evaluating testing experiences and cognitive and affective responses to multiplex testing.
Of 73 patients, 49 (67%) completed pretest counseling. BRCA1/2-negative patients were more likely to proceed with multiplex testing (86%) than those untested for BRCA1/2 (43%; P < 0.01). Many patients declining testing reported concern for uncertainty and distress. Most patients would not change anything about their pre- (76%) or posttest (89%) counseling sessions. Thirty-three patients (72%) were classified as making an informed choice, including 81% of those who proceeded with multiplex testing. Knowledge increased significantly. Anxiety, depression, uncertainty, and cancer worry did not significantly increase with multiplex testing.
Some patients, particularly those without prior BRCA1/2 testing, decline multiplex testing. Most patients who proceeded with testing did not experience negative psychological responses, but larger studies are needed. The tiered-binned approach is an innovative genetic counseling and informed consent model for further study in the era of multiplex testing.
Journal Article
Memorial Service Held For Rosalynn Carter. Aired 1-1:30p ET
by
Jamie Gangel,Kate Andersen Brower
,
Tapper, Jake
,
Leah Wright Rigueur
in
Carter, Jimmy
,
First ladies
,
Governors
2023
A memorial service is held for former first lady RosalynnCarter. GUESTS: Kai Bird
Transcript
Building a Bridge Between Genetics and Outcomes Research: Application in Autism (The AutGO Study)
by
Talebizadeh, Zohreh
,
Shah, Ayten
in
Advisory Committees - organization & administration
,
Advocacy
,
Autism
2018
Background
Concerns over the need to improve translational aspects of genetics research studies and engaging community members in the research process have been noted in the literature and raised by patient advocates. In addition to the work done by patient advocacy groups, organizations such as the Patient-Centered Outcomes Research Institute advocate for a change in the culture of research from being researcher-driven to becoming more patient-driven.
Objective
Our project, Autism Genetics and Outcomes (AutGO), consists of two phases. The goal for phase I was to initiate a general discussion around the main topic (i.e., linking genetics and outcomes research). We used the Patient-Centered Outcomes Research Institute engagement approach to: (aim 1) develop a partnership with a wide range of stakeholders to assess their perspective on developing projects that use both genetics and outcomes research data/principles; (aim 2) identify barriers, facilitators, and needs to promote engagement in patient-centered genetics research; and (aim 3) distill and describe actions that may facilitate utilization of patient/parent perspectives in designing genetics research studies.
Methods
In phase I, we formed a community advisory board composed of 33 participants, including outcomes and genetics researchers, clinicians, healthcare providers, patients/family members, and community/industry representatives, and convened six sessions over the 12-month period. We structured the sessions as a combination of online PowerPoint presentations, surveys, and in-person group discussions. During the sessions, we discussed topics pertaining to linking genetics and outcomes research and reviewed relevant materials, including patient stories, research projects, and existing resources.
Results
Two sets of surveys, project evaluations (
k
= 2) and session evaluations (
k
= 6), were distributed among participants. Feedback was analyzed using content analysis strategies to identify the themes and subthemes. Herein, we describe: the established partnership (aim 1), the identified barriers, facilitators, and needs (aim 2), as well as the lessons learned and suggested recommendations for the research community (aim 3). Following phase I participants’ recommendation, in phase II, we will focus on a specific disease (i.e., autism); this projected plan is briefly outlined to highlight the overarching goal of the project and its potential significance. We also discuss the study limitations, challenges for conducting this type of multidisciplinary work, as well as potential ways to address them.
Conclusions
The AutGO project has created a unique collaborative forum to facilitate the much needed dialogue between genetics and outcomes researchers, which may contribute to finding ways to improve the translational aspects of genetics research studies.
Journal Article
READERS WRITE
Since economics is an amoral study of the production, distribution and consumption of goods and services with alternative uses, and since [Jay Bookman] has little proven competence in economics or philosophy, it is difficult to take seriously his claims about \"economic morality\" in light of tax policy and corporate activities. He doesn't ask, \"What would happen to HP and Compaq if they did not merge?\" Would they go out of business, impoverishing that many more tens of thousands of workers and shareholders? Clearly, Bookman exaggerates economic morality to push the anti-capitalistic position that any tax cut or corporate merger is immoral. Liberals like him should examine both sides of issues before passing irrelevant moral judgments. Whatever happened to shared sacrifices in time of war? The military grunts and their folks get the hardships and spill their blood (\"Yes, but they are volunteers . . . \") while the rest get tax cuts --- generous ones, for the well-to-do. Every enacted tax cut favors corporations or the rich, not the working man. The tax rate is cut on dividends, but not on dividends earned on a 401(k) as it's cashed in. Inheritance taxes will be eliminated, using the phony argument that wealth was taxed once already. Great wealth is almost always the result of capital appreciation, therefore it was never taxed.
Newspaper Article
The Essential Guide to Corporate Real Estate
2015
The Essential Guide to Corporate Real Estate is a fundamental examination of Corporate Real Estate (\"CRE\"). As a foundational manual, the guide covers the spectrum of variables shaping the daily decisions of CRE professionals and provides insights and strategies for effective management.
The State Funeral Of President Jimmy Carter. Aired 4:30-5p ET
2025
Live coverage of the state funeral of President Jimmy Cartercontinues. GUESTS: Anita McBride, Stuart Eizenstat, James Fallows
Transcript
Presidential Aircraft Arrives At Joint Base Andrews; Arrival Ceremony For President Jimmy Carter; Today, Carter To Be Honored At The U.S. Capitol; Presidential Hearse Departs For Navy Memorial; Sir Richard Branson, Founding Member, The Elders, Discusses President Carter's Legacy. Aired 2:30-3p ET
2025
The presidential aircraft carrying the casket of formerPresident Jimmy Carter arrives at Joint Base Andrews and then heads tothe Capitol to lie in state. The arrival ceremony at Joint BaseAndrews begins, honoring former President Carter with a 21-gun saluteand the Air Force Band playing \"Hail to the Chief\" and \"Abide withMe.\" The presidential hearse carrying former President Carter's casketdeparts Joint Base Andrews and heading for the Navy Memorial, and thenon to the U.S. Capitol. Sir Richard Branson, a founding member withPresident Carter of The Elders, a group of independent global leaderswho work together for peace, justice and human rights, discussesPresident Carter's legacy. GUESTS: Kai Bird, Stuart Eizenstat, Richard Branson
Transcript
Former President Jimmy Carter To Be Honored At State Funeral. Aired 9:30-10a ET
2025
Former President Jimmy Carter will be honored at a statefuneral today at the Washington National Cathedral, where PresidentJoe Biden will deliver a eulogy. Lawmakers and the public paid theirrespects to the former president as he lay in state at the U.S.Capitol earlier this week. GUESTS: David Kennerly, Jill Stuckey, Anita McBride
Transcript
Trump to Leave Blair House for Church Service; Sen. Katie Britt (R-AL) is Interviewed about the Trump Administration. Aired 8:30-9a ET
2025
Donald Trump is set to leave the Blair House for the churchservice. Sen. Katie Britt (R-AL) is interviewed about the expectationsof the incoming Trump administration. GUESTS: Katie Britt
Transcript