Marketing Genetic Tests: Empowerment or Snake Oil?

2005 ◽  
Vol 32 (5) ◽  
pp. 676-685 ◽  
Author(s):  
Deborah J. Bowen ◽  
Kathryn M. Battuello ◽  
Monique Raats
Keyword(s):  
United States ◽  
Genetic Testing ◽  
Public Education ◽  
General Public ◽  
The United States ◽  
Genetic Tests ◽  
Accurate Knowledge

Genetic tests are currently being offered to the general public with little oversight and regulation as to which tests are allowed to be sold clinically and little control over the marketing and promotion of sales and use. This article provides discussion and data to indicate that the general public holds high opinions of genetic testing and that current media outlets for public education on genetic testing are not adequate to increase accurate knowledge of genetics. The authors argue that more regulation is needed to control and correct this problem in the United States.

scholarly journals Promoting Safe and Effective Genetic Tests in the United States: Work of the Task Force on Genetic Testing

1999 ◽  
Vol 45 (5) ◽  
pp. 732-738 ◽  
Author(s):  
Neil A Holtzman
Keyword(s):  
United States ◽  
Genetic Testing ◽  
Human Services ◽  
Task Force ◽  
Healthcare Providers ◽  
The United States ◽  
Appropriate Use ◽  
Genetic Tests ◽  
Health And Human Services ◽  
Other Information

Abstract The Task Force on Genetic Testing was created to review genetic testing in the United States and, when necessary, to make recommendations to ensure the development of safe and effective genetic tests. A survey to explore the state of genetic testing was undertaken for the Task Force and completed in early 1995. The survey, as well as literature reports and other information collected for the Task Force, showed problems affecting safety and effectiveness, as defined by the Task Force: validity and utility of predictive tests, laboratory quality, and appropriate use by healthcare providers and consumers. On the basis of these findings, the Task Force made several recommendations to ensure safe and effective genetic testing. The Secretary of Health and Human Services followed up one recommendation by creating the Secretary’s Advisory Committee on Genetic Testing. One of its functions will be to implement other recommendations of the Task Force.

scholarly journals Sales, Acquisitions, and Mergers of Direct-to-Consumer Genetic Testing Companies

2021 ◽  
Vol 8 (2) ◽  
pp. 403-421
Author(s):  
Alyssa K. McLeod
Keyword(s):  
United States ◽  
Genetic Testing ◽  
Personal Information ◽  
Personal Data ◽  
The United States ◽  
Genetic Tests ◽  
Direct To Consumer ◽  
Testing Company ◽  
Privacy Risks ◽  
A Company

Direct-to-consumer genetic tests have become increasingly popular in the United States within the last few years. However, these tests pose many risks to the consumer, most notably privacy risks. A subset of these privacy risks involves the issue of company mergers, acquisitions, and sales. Many companies in the direct-to-consumer genetic testing market have privacy policies that contain a variation of a “business transfer” clause. These clauses specify that in the event the company goes through a business transition such as a sale, merger, or acquisition, the consumer’s personal information—including the consumer’s DNA—will be among the assets transferred. This Article explores the risks associated with these business transfer clauses as they relate to the consumer, and presents a solution to mitigate said risks. The solution lies in FTC v. Toysmart, wherein a toy company that filed for bankruptcy was restricted in selling its assets—which included its customers’ personal data— only to entities with the same interests as the toy company. This Article urges that the default interpretation standard of business transfer clauses track similarly such that a direct-to-consumer genetic testing company may only be sold to, merged with, or acquired by a company with the same or like interests.

BRCA1/2 Genetic Testing in the Community Setting

2002 ◽  
Vol 20 (22) ◽  
pp. 4485-4492 ◽  
Author(s):  
Wendy Y. Chen ◽  
Judy E. Garber ◽  
Suzanne Higham ◽  
Katherine A. Schneider ◽  
Katie B. Davis ◽  
...  
Keyword(s):  
United States ◽  
Ovarian Cancer ◽  
Genetic Testing ◽  
Cancer Prevention ◽  
Community Setting ◽  
The United States ◽  
Care Providers ◽  
Prevention Strategies ◽  
History Of ◽  
Genetic Results

PURPOSE: BRCA1/2 genetic testing has been commercially available in the United States since 1996. Most published reports described BRCA1/2 testing as research studies at large academic centers, but less is known about testing in the community. This study evaluates the process and early outcomes of BRCA1/2 genetic testing as a clinical service in the community setting. METHODS: Surveys were mailed to women in the United States whose health care providers ordered BRCA1/2 genetic testing from Myriad Genetic Laboratories from August 1998 through July 2000. Women tested at 149 large academic centers were excluded. Main outcome measures were demographic characteristics, recall of and satisfaction with the genetic testing process, and likelihood of pursuing cancer prevention strategies. RESULTS: Among the 646 respondents, 414 (64%) had a personal history of cancer and 505 (78%) had at least one first-degree relative with breast and/or ovarian cancer. Most subjects (82%) recalled discussions of informed consent before testing (median time, 30 minutes). Genetic results were conveyed during an office visit (57%), by telephone (39%), or by mail (3%). More than 75% of respondents were “very satisfied with the counseling received.” Cancer-free subjects with a germline mutation were more likely to consider prevention strategies after receiving the genetic results. CONCLUSION: Virtually all respondents had a personal and/or family history of breast/ovarian cancer. Although pretest and posttest communications were not standardized, overall satisfaction with clinical breast cancer genetic testing was high. Additional follow-up will provide data on future cancer prevention practices and cancer incidence.

scholarly journals Genetic Testing by Sports Medicine Physicians in the United States: Attitudes, Experiences, and Knowledge

Sports ◽  
2018 ◽  
Vol 6 (4) ◽  
pp. 145
Author(s):  
Eleanor Taranto ◽  
Michael Fishman ◽  
Holly Benjamin ◽  
Lainie Ross
Keyword(s):  
United States ◽  
Genetic Testing ◽  
Sports Medicine ◽  
Injury Risk ◽  
Expert Knowledge ◽  
Disease Risk ◽  
Sickle Cell Trait ◽  
Positive Family History ◽  
The United States ◽  
Medical Society

It remains unknown whether and how sports medicine physicians currently utilize genetic testing in their clinical practice. This study sought to assess knowledge of, experience with, and attitudes towards genetic testing by sports medicine physicians in the United States (US). An email with a survey hyperlink was distributed twice to members of the American Medical Society for Sports Medicine (AMSSM) listserv in September 2016, with approximately a 10% response rate. Questions focused on knowledge of, experience with, and attitudes towards testing for different genes related to sports proficiency, injury risk, and disease risk. Few AMSSM physicians believe that genetic testing to adapt training (12%) or to choose a sport (2%) is ready for clinical adoption. Most respondents self-reported minimal knowledge about, and limited experience with, genetic testing. The main exception was screening for sickle cell trait (SCT) for which most (84%) reported moderate/significant/expert knowledge and over two-thirds had ordered testing. Although most respondents thought it appropriate to counsel and test for health conditions associated with cardiac and connective tissue disorders in the setting of a positive family history, only a minority had been asked to do so. Five or fewer respondents (2%) had been asked to test for performance-associated variants (Angiotensin Converting Enzyme (ACE) II and Alpha-Actinin 3 (ACTN3)), and five or fewer (2%) would recommend changes based on the results. Our study provides a baseline of current US sports medicine physicians’ minimal experiences with, and knowledge of, genetic testing. The findings of our study indicate that sports medicine physicians require further genetics education as it relates to sports and exercise in order to be prepared to competently engage with their patients and to develop sound professional organizational policies.

scholarly journals Gubernatorial Rhetoric and the Purpose of Education in the United States

2011 ◽  
Vol 6 (6) ◽  
Author(s):  
Dick M. Carpenter
Keyword(s):  
United States ◽  
Economic Efficiency ◽  
General Public ◽  
The United States ◽  
The State ◽  
Policy Implications ◽  
Education Policies ◽  
Education Experience ◽  
Purpose Of Education

For decades, scholars have debated the purpose of U.S. education, but too often ignored how non-education-related power brokers define education or the requisite consequences.[Qu: Is there a different way of phrasing this? I'm not sure, in reading it, what you intend "the requisite consequences" to mean. Does this mean the results of education, or the consequences of inaccurate definitions of it? Also, may we rephrase "non-education-related power brokers" to something like "power brokers without education experience"?]This study examines how one of the most prominent categories of U.S. leaders, state governors, defines education and discusses the policy implications. We examine gubernatorial rhetoric—that is, public speeches—about education, collected from State of the State speeches from 2001 to 2008. In all, one purpose gains overwhelmingly more attention—economic efficiency. As long as governors and the general public, seen enthymematically through gubernatorial rhetoric, define education in economic terms, other purposes will likely remain marginalized, leading to education policies designed disproportionately to advance economic ends.

The Pioneer in American Life Insurance Marketing

1938 ◽  
Vol 12 (5) ◽  
pp. 65-75
Author(s):  
J. Owen Stalson
Keyword(s):  
United States ◽  
Eighteenth Century ◽  
North America ◽  
Life Insurance ◽  
General Public ◽  
Colonial America ◽  
The United States ◽  
Insurance Companies ◽  
Insurance Company ◽  
Fire Insurance

Colonial America gave little thought to life insurance selling. The colonists secured protection against marine risks from private underwriters, first in London, eventually at home. It has been asserted that Philadelphia had no fire insurance until 1752; Boston none before 1795. The first corporations formed in this country for insuring lives were those of the Presbyterian Ministers Fund (1759) and a similar company organized for the benefit of Episcopal ministers (1769). Neither of these corporations offered insurance to the general public. In the last decade of the eighteenth century many insurance companies were formed in the United States. At least five were chartered to underwrite life risks, but only one, The Insurance Company of North America, appears to have accepted any. There is no basis for saying that any of these early companies tried to sell life insurance.

Radon Reduction in Homes: Research Phase to Operational Phase

1988 ◽  
Vol 24 (1-4) ◽  
pp. 537-539 ◽  
Author(s):  
H.M. Mardis ◽  
R.J. Guimond ◽  
E. Fisher
Keyword(s):  
United States ◽  
Technology Transfer ◽  
Environmental Protection ◽  
General Public ◽  
The United States ◽  
Evaluation Program ◽  
Hands On ◽  
Research Findings ◽  
Operational Phase ◽  
Mitigation Design

Abstract The United States Environmental Protection Agency's (USEPA) House Evaluation Program (HEP) is an on-going programme designed to transfer research findings on radon diagnostic and mitigation technologies to the general public. The HEP accomplishes this technology transfer by providing guidance and hands-on training to States, homeowners, and local contractors while conducting radon diagnostics and mitigation design planning in houses. An overview of the HEP is given and the programme's accomplishments and findings to date are discussed.

Readability of Online Health Information: A Meta-Narrative Systematic Review

2018 ◽  
Vol 33 (5) ◽  
pp. 487-492 ◽  
Author(s):  
Lubna Daraz ◽  
Allison S. Morrow ◽  
Oscar J. Ponce ◽  
Wigdan Farah ◽  
Abdulrahman Katabi ◽  
...  
Keyword(s):  
United States ◽  
Systematic Review ◽  
Health Information ◽  
Grade Level ◽  
General Public ◽  
Sixth Grade ◽  
The United States ◽  
Reading Level ◽  
Online Health Information ◽  
Cross Sectional

Online health information should meet the reading level for the general public (set at sixth-grade level). Readability is a key requirement for information to be helpful and improve quality of care. The authors conducted a systematic review to evaluate the readability of online health information in the United States and Canada. Out of 3743 references, the authors included 157 cross-sectional studies evaluating 7891 websites using 13 readability scales. The mean readability grade level across websites ranged from grade 10 to 15 based on the different scales. Stratification by specialty, health condition, and type of organization producing information revealed the same findings. In conclusion, online health information in the United States and Canada has a readability level that is inappropriate for general public use. Poor readability can lead to misinformation and may have a detrimental effect on health. Efforts are needed to improve readability and the content of online health information.

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