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• RefWorks (Direct export to RefWorks)

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• Reference Manager
• EndNote
• RefWorks (Direct export to RefWorks)

Choose an application

• Reference Manager
• EndNote
• RefWorks (Direct export to RefWorks)

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• Reference Manager
• EndNote
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Aims: Boosting patient participation in research is, currently, one of the major goalsof biomedical research stakeholders. Genetic Alliance, a patient advocacyorganization, recently launched a web platform, named Reg4ALL, where individualscan upload their health and medical data, compare it with each other, and make thedata available to researchers. As stated by the funders in several publications, theplatform aims to facilitate the enrolment of patients in clinical trials. Given thenovelty of the approach to recruit patients, we aimed to study the informationcommunicated to users on the Reg4all website. Materials & Methods: A qualitativecontent analysis of the communication materials available on the Reg4LL website hasbeen conducted. Results: It appears that only the process of making data available toresearchers is well documented. Other aims, related to self-care and to find bettermedical treatment, are evoked. In addition, the Reg4ALL experience is positivelyframed to users as being "fun", "safe", "relational" and "empowering". Moreover,contradictions have been found between the easily available materials and the "smallprints", regarding the personalized medical advices that might be provided by the tool.Furthermore, no clear information has been found about clinical research or any othertype of research. There is also no information about the identity of the researchers thatwill mine the data. We can postulate that potential effects on individuals, due to thispartial and incomplete communication, can be of different types; herein we discussthe following: 1) the individual may be misled regarding the nature of the initiative; 2)the communication can prime a future therapeutic misconception 3) a loss of trust canoccur if the individual have the perception that she has been manipulated, or ifinformation have been hidden. Conclusion: The analysis of the communicationmaterials of Reg4ALL reveals how difficult it can be to explain, and maketransparent, the goals o...

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The commercial offer Direct-To-Consumer (DTC) of genetic testing services is constantly changing. Among different types of tests, preconception genetic carrier tests are being sold by web-based companies for recessive genetic disorders as well as for panels of diseases and conditions. Guidelines, official statements and normative documents have been provided by different national and international institutions in order to clarify the Ethical, Legal, and Social Issues (ELSI) involved. However, there is a lack of consensus about the appropriate level of regulation that should apply to the commercial offer of preconception genetic carrier tests. In the present paper, the ELSI that pertain to the commercial offer of preconception genetic carrier tests, and the philosophical literature about the spread of genetic knowledge in liberal societies are explored, in order to evaluate the appropriate level of regulation that should apply to the commercial offer of preconception genetic carrier tests. Libertarian, conservative and intermediate liberal positions are explored and assessed, in order to provide a theoretical framework for the further development of regulatory actions. The concepts of regulation, reproductive freedom and State neutrality are critically explored and assessed. The theoretical framework provided is based on the assessment of the ELSI involved and on the evaluation of the philosophical positions identified. Lastly, the implementation of the ACCE framework, the focus on nondirective genetic counselling, and the connection with recommendations provided by national and international institutions regarding the conditions for which the test is offered are indicated as the key points of the theoretical framework proposed.