“It’s our DNA, we deserve the right to test!” A content analysis of a petition for the right to access direct-to-consumer genetic testing

2013 ◽  
Vol 10 (7) ◽  
pp. 729-739 ◽  
Author(s):  
Yeyang Su ◽  
Pascal Borry ◽  
Ina C Otte ◽  
Heidi C Howard
Keyword(s):  
Content Analysis ◽  
Genetic Testing ◽  
Direct To Consumer ◽  
The Right

Science Communication Meets Consumer Relations: An Analysis of Twitter Use by 23andMe

2020 ◽  
Vol 42 (2) ◽  
pp. 244-264
Author(s):  
Nicole M. Lee ◽  
Alan Abitbol ◽  
Matthew S. VanDyke
Keyword(s):  
Content Analysis ◽  
Genetic Testing ◽  
Science Communication ◽  
Scientific Research ◽  
Research Results ◽  
For Profit ◽  
Direct To Consumer ◽  
Science News ◽  
Genetic Science ◽  
Over Time

For-profit organizations play a considerable role in the dissemination of scientific research and information. In the case of direct-to-consumer genetic testing, this is important because how consumers learn about genetic science can influence health decisions and support for science. Through a content analysis of Twitter posts ( N = 1,000), this study examined how 23andMe balances traditional promotion, communicating product benefits, and sharing scientific research. Results indicated that about half of all posts share science news but sharing science has declined over time. Far fewer posts communicate about the products or their benefits, but these posts garner more retweets and replies.

Direct to consumer genetic testing and the libertarian right to test

2017 ◽  
Vol 44 (11) ◽  
pp. 787-789 ◽  
Author(s):  
Wendy Elizabeth Bonython ◽  
Bruce Baer Arnold
Keyword(s):  
Genetic Testing ◽  
Physical Properties ◽  
Prima Facie ◽  
Genetic Privacy ◽  
Physical Body ◽  
Direct To Consumer ◽  
Rights And Interests ◽  
Privacy Violation ◽  
The Right ◽  
Regulatory Intervention

Loi recently proposed a libertarian right to direct to consumer genetic testing (DTCGT)— independent of autonomy or utility—reflecting Cohen’s work on self-ownership and Hohfeld’s model of jural relations. Cohen’s model of libertarianism dealt principally with self-ownership of the physical body. Although Loi adequately accounts for the physical properties of DNA, DNA is also an informational substrate, highly conserved within families. Information about the genome of relatives of the person undergoing testing may be extrapolated without requiring direct engagement with their personal physical copy of the genome, triggering rights and interests of relatives that may differ from the rights and interests of others, that is, individual consumers, testing providers and regulators. Loi argued that regulatory interference with exercise of the right required justification, whereas prima facie exercise of the right did not. Justification of regulatory interference could include ‘conflict with other people’s rights’, ‘aggressive’ use of the genome and ‘harming others’. Harms potentially experienced by relatives as a result of the individual’s exercise of a right to test include breach of genetic privacy, violation of their right to determine when, and if, they undertake genetic testing and discrimination. Such harms may justify regulatory intervention, in the event they are recognised; motives driving ‘aggressive’ use of the genome may also be relevant. Each of the above criteria requires clarification, as potential redundancies and tensions exist between them, with different implications affecting different groups of rights holders.

Anxiety delivered direct-to-consumer: are we asking the right questions about the impacts of DTC genetic testing?

2016 ◽  
Vol 53 (12) ◽  
pp. 798-799 ◽  
Author(s):  
Serena Oliveri ◽  
Heidi C Howard ◽  
Chiara Renzi ◽  
Mats G Hansson ◽  
Gabriella Pravettoni
Keyword(s):  
Genetic Testing ◽  
Direct To Consumer ◽  
The Right

“Better Not to Know?”: Justifiable Limits on the Right to Information in the Realm of dtc Genetic Testing. An Analysis of the European and Spanish Legal Framework

2017 ◽  
Vol 24 (2) ◽  
pp. 175-197 ◽  
Author(s):  
Juan María Martínez Otero
Keyword(s):  
Public Health ◽  
Genetic Testing ◽  
Healthcare Professional ◽  
Present Article ◽  
Legal Framework ◽  
Genetic Tests ◽  
Direct To Consumer ◽  
Legal Restrictions ◽  
Right To Information ◽  
The Right

The rapid advance of genetics increases the availability in the market of different genetic tests, which can be acquired directly by consumers without the intermediation of a healthcare professional. Both the European and the Spanish legal framework have restricted the access to these direct-to-consumer (dtc) genetic tests on the grounds of different reasons, such as the protection of consumers or the preservation of public health. The present article discusses these legal restrictions under the light of the right to information.

scholarly journals Making a case for genomics in chiropractic education

2021 ◽  
Author(s):  
Kara D. Burnham ◽  
Leslie A.K. Takaki
Keyword(s):  
Primary Care ◽  
Content Analysis ◽  
Genetic Testing ◽  
Patient Care ◽  
Pearson Correlation ◽  
Clinical Genomics ◽  
Introductory Course ◽  
Direct To Consumer ◽  
Short Survey ◽  
Chiropractic Education

Objective To determine if an existing course in genetics should be revised to refocus on the topic of genomics and its impact on health and primary care, a survey of chiropractors was conducted regarding genomics and patient care. Methods A short survey was designed to ascertain chiropractors' knowledge and use of genomics in their practices, particularly regarding direct to consumer genetic testing. Nine closed-ended questions and 2 open-ended questions were included. Pearson correlation was used to evaluate relationships between close-ended responses. Content analysis was conducted on the final open-ended question that queried respondents for further comments. Results There were 181 completed surveys returned. Patients do ask chiropractors about their own direct to consumer genetic testing results—42% indicated that they are approached by patients 1–3 times per month to discuss genetics/genomics. Knowledge of genomics varies among chiropractors, yet 51% feel that teaching genomics is moderately (31%) or extremely (20%) important. Conclusion An introductory course in clinical genomics is necessary to prepare a chiropractor for patient care.

scholarly journals Behavioural changes, sharing behaviour and psychological responses after receiving direct-to-consumer genetic test results: a systematic review and meta-analysis

2017 ◽  
Vol 9 (1) ◽  
pp. 1-18 ◽  
Author(s):  
Kelly F. J. Stewart ◽  
Anke Wesselius ◽  
Maartje A. C. Schreurs ◽  
Annemie M. W. J. Schols ◽  
Maurice P. Zeegers
Keyword(s):  
Health Care ◽  
Genetic Testing ◽  
Behaviour Change ◽  
Meta Analysis ◽  
Search Term ◽  
Psychological Responses ◽  
Direct To Consumer ◽  
Genetic Test Results ◽  
The Right ◽  
Meta Analyses

Abstract It has been hypothesised that direct-to-consumer genetic tests (DTC-GTs) could stimulate health behaviour change. However, genetic testing may also lead to anxiety and distress or unnecessarily burden the health care system. The aim is to review and meta-analyse the effects of DTC-GT on (1) behaviour change, (2) psychological response and (3) medical consumption. A systematic literature search was performed in three databases, using “direct-to-consumer genetic testing” as a key search term. Random effects meta-analyses were performed when at least two comparable outcomes were available. After selection, 19 articles were included involving 11 unique studies. Seven studies involved actual consumers who paid the retail price, whereas four included participants who received free genetic testing as part of a research trial (non-actual consumers). In meta-analysis, 23% had a positive lifestyle change. More specifically, improved dietary and exercise practices were both reported by 12%, whereas 19% quit smoking. Seven percent of participants had subsequent preventive checks. Thirty-three percent shared their results with any health care professional and 50% with family and/or friends. Sub-analyses show that behaviour change was more prevalent among non-actual consumers, whereas sharing was more prevalent among actual consumers. Results on psychological responses showed that anxiety, distress and worry were low or absent and that the effect faded with time. DTC-GT has potential to be effective as a health intervention, but the right audience needs to be addressed with tailored follow-up. Research is needed to identify consumers who do and do not change behaviour or experience adverse psychological responses.

scholarly journals Informed Choice in Direct-to-Consumer Genetic Testing (DTCGT) Websites: A Content Analysis of Benefits, Risks, and Limitations

2011 ◽  
Vol 21 (3) ◽  
pp. 433-439 ◽  
Author(s):  
Amanda Singleton ◽  
Lori Hamby Erby ◽  
Kathryn V. Foisie ◽  
Kimberly A. Kaphingst
Keyword(s):  
Content Analysis ◽  
Genetic Testing ◽  
Informed Choice ◽  
Direct To Consumer

scholarly journals Innovative Commercial and Private Genetic Testing Raises Privacy and Confidentiality Concerns

2018 ◽  
pp. 31-33
Author(s):  
Syeda Masooma Zaidi
Keyword(s):  
Genetic Testing ◽  
Personal Information ◽  
Personal Data ◽  
Third Party ◽  
Sensitive Information ◽  
Test Results ◽  
Direct To Consumer ◽  
Client Data ◽  
The Right ◽  
Privacy And Confidentiality

Obtaining information about your genes can be as easy as swabbing your cheek for DNA testing. Companies that offer direct-to-consumer genetic testing with saliva have the authority to collect and share personal data as well as test results from their clients. However, patients want their personal information to be protected and although these companies ask for consent before sharing information with third-party sources, companies have the right to use client data to initiate research or improve their business. Genetic testing companies need to respect their clients and understand that they are paying for a service which deals with sensitive information that individuals may not want collected and stored.

Experiences of individuals receiving “Not Parent Expected” (NPE) results through direct-to-consumer genetic testing

2021 ◽  
Vol 132 ◽  
pp. S289
Author(s):  
Julia Becker ◽  
Janey Youngblom ◽  
Brianne Kirkpatrick ◽  
Liane Abrams
Keyword(s):  
Genetic Testing ◽  
Direct To Consumer
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