scholarly journals ASHG Statement* on Direct-to-Consumer Genetic Testing in the United States

2007 ◽  
Vol 81 (3) ◽  
pp. 635-637 ◽  
Author(s):  
Kathy Hudson ◽  
Gail Javitt ◽  
Wylie Burke ◽  
Peter Byers
Keyword(s):  
United States ◽  
Genetic Testing ◽  
The United States ◽  
Direct To Consumer

scholarly journals Bioconstitutional Imaginaries and the Comparative Politics of Genetic Self-knowledge

2020 ◽  
Vol 45 (6) ◽  
pp. 1087-1118
Author(s):  
J. Benjamin Hurlbut ◽  
Ingrid Metzler ◽  
Luca Marelli ◽  
Sheila Jasanoff
Keyword(s):  
United States ◽  
United Kingdom ◽  
Genetic Testing ◽  
Comparative Politics ◽  
Well Being ◽  
The United States ◽  
Direct To Consumer ◽  
The United Kingdom ◽  
Before And After ◽  
Self Knowledge

Genetic testing has become a vehicle through which basic constitutional relationships between citizens and the state are revisited, reaffirmed, or rearticulated. The interplay between the is of genetic knowledge and the ought of government unfolds in the context of diverse imaginaries of the forms of human well-being, freedom, and flourishing that states have a duty to support. This article examines how the United Kingdom, Germany, and the United States governed testing for Alzheimer’s disease, and how they diverged in defining potential harms, benefits, and objects of regulation. Comparison before and after the arrival of direct-to-consumer genetic tests reveals differences in national understandings of what it means to protect life and citizenship: in the United Kingdom, ensuring physical wellness through clinical utility; in the United States, protecting both citizens’ physical well-being and freedom to choose through a framework of consumer protection; and in Germany, emphasizing individual flourishing and an unburdened sense of human development that is expressed in genetic testing law and policy as a commitment to the stewardship of personhood. Operating with their own visions of what it means to protect life and citizenship, these three states arrived at settlements that coproduced substantially different bioconstitutional regimes around Alzheimer’s testing.

ASHG Statement* on Direct-to-Consumer Genetic Testing in the United States

2007 ◽  
Vol 110 (6) ◽  
pp. 1392-1395 ◽  
Author(s):  
Kathy Hudson ◽  
Gail Javitt ◽  
Wylie Burke ◽  
Peter Byers
Keyword(s):  
United States ◽  
Genetic Testing ◽  
The United States ◽  
Direct To Consumer

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 IMPACT OF IN VITRO FERTILIZATION AND PREIMPLANTATION GENETIC TESTING ON THE SEX RATIO IN THE UNITED STATES

2020 ◽  
Vol 114 (3) ◽  
pp. e288-e289
Author(s):  
Kathryn L. Shaia ◽  
Tracy Truong ◽  
Carl F. Pieper ◽  
Anne Z. Steiner
Keyword(s):  
United States ◽  
Genetic Testing ◽  
In Vitro Fertilization ◽  
Sex Ratio ◽  
The United States ◽  
Preimplantation Genetic Testing ◽  
Vitro Fertilization

scholarly journals Controversial advertising of medicines. A comparison between Poland and the United States

2018 ◽  
Vol 21 (5) ◽  
pp. 67-79
Author(s):  
Marta Makowska
Keyword(s):  
United States ◽  
Prescription Drugs ◽  
The United States ◽  
The European Union ◽  
Negative Consequences ◽  
Direct To Consumer ◽  
Law And Ethics ◽  
The Us ◽  
The Law ◽  
Direct To Consumer Advertising

For many years, the subject of aggressive marketing campaigns conducted by pharmaceutical companies has been raised in Poland. Drug ads are everywhere, on television, the radio, magazines and on the Internet. Therefore, it is extremely important is to ensure both their legal and ethical dimension. This article will present the differences between direct-to-consumer advertising of medicines in Poland and in the US. The dissimilarities result mainly from differences in legislation. In Poland, the law is much stricter than in the US. For example, in the United States companies are allowed to advertise prescription drugs directly to patients. In the whole of the European Union, and thus in Poland, it is strictly prohibited. The article will also present other regulations existing in Poland and in the United States and it will compare them. It will offer examples of violations of the law and ethics in the advertising of medicine in both countries. Lastly, it will briefly outline the negative consequences of unacceptable pharmaceutical marketing.

Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries

2019 ◽  
Vol 25 (8) ◽  
pp. 1198-1204 ◽  
Author(s):  
Jean-Christophe Bélisle-Pipon ◽  
Effy Vayena ◽  
Robert C. Green ◽  
I. Glenn Cohen
Keyword(s):  
United States ◽  
Genetic Testing ◽  
Medical Research ◽  
The United States ◽  
Insurance Discrimination
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