Genetic counselor approaches to BRCA1/2 direct‐to‐consumer genetic testing results

Author(s):  
Sarah Burke ◽  
Maureen Mork ◽  
Krista Qualmann ◽  
Ashley Woodson ◽  
Min Jin Ha ◽  
...  
2014 ◽  
Author(s):  
Nicanor Austriaco

Pioneered by companies like 23andMe.com, deCODEme.com, and Navigenics.com, direct-to-consumer genetic testing refers to genetic tests that are marketed directly to consumers via television, print media, or the Internet. This kind of testing provides access to a customer’s genetic information without necessarily involving either a medical health care professional or a genetic counselor in the process. In recent years, a course offered to medical and graduate students at Stanford University has included an option for students to undergo personal genotyping, raising the possibility that direct-to-consumer genetic testing could also be incorporated into undergraduate biology courses to enhance student learning. In this study, I assess the attitudes and concerns of college students enrolled in the first semester of an introductory majors course in biology, before and after they had completed the course, regarding the availability of this technology and its possible use in the college classroom. The pre-course survey revealed that these students were open to the possibility of using this technology in their courses, but that they had concerns about the confidentiality and the accuracy of their genetic results. Strikingly, however, completing the genetics, molecular and cellular biology semester-long portion of the yearlong introductory sequence in biology appeared to boost student confidence in this technology and its use in the undergraduate classroom.


2014 ◽  
Author(s):  
Nicanor Austriaco

Pioneered by companies like 23andMe.com, deCODEme.com, and Navigenics.com, direct-to-consumer genetic testing refers to genetic tests that are marketed directly to consumers via television, print media, or the Internet. This kind of testing provides access to a customer’s genetic information without necessarily involving either a medical health care professional or a genetic counselor in the process. In recent years, a course offered to medical and graduate students at Stanford University has included an option for students to undergo personal genotyping, raising the possibility that direct-to-consumer genetic testing could also be incorporated into undergraduate biology courses to enhance student learning. In this study, I assess the attitudes and concerns of college students enrolled in the first semester of an introductory majors course in biology, before and after they had completed the course, regarding the availability of this technology and its possible use in the college classroom. The pre-course survey revealed that these students were open to the possibility of using this technology in their courses, but that they had concerns about the confidentiality and the accuracy of their genetic results. Strikingly, however, completing the genetics, molecular and cellular biology semester-long portion of the yearlong introductory sequence in biology appeared to boost student confidence in this technology and its use in the undergraduate classroom.


2021 ◽  
Vol 132 ◽  
pp. S289
Author(s):  
Julia Becker ◽  
Janey Youngblom ◽  
Brianne Kirkpatrick ◽  
Liane Abrams

2021 ◽  
Vol 14 (1) ◽  
Author(s):  
Masahiro Inoue ◽  
Shota Arichi ◽  
Tsuyoshi Hachiya ◽  
Anna Ohtera ◽  
Seok-Won Kim ◽  
...  

Abstract Objective In order to assess the applicability of a direct-to-consumer (DTC) genetic testing to translational research for obtaining new knowledge on relationships between drug target genes and diseases, we examined possibility of these data by associating SNPs and disease related phenotype information collected from healthy individuals. Results A total of 12,598 saliva samples were collected from the customers of commercial service for SNPs analysis and web survey were conducted to collect phenotype information. The collected dataset revealed similarity to the Japanese data but distinguished differences to other populations of all dataset of the 1000 Genomes Project. After confirmation of a well-known relationship between ALDH2 and alcohol-sensitivity, Phenome-Wide Association Study (PheWAS) was performed to find association between pre-selected drug target genes and all the phenotypes. Association was found between GRIN2B and multiple phenotypes related to depression, which is considered reliable based on previous reports on the biological function of GRIN2B protein and its relationship with depression. These results suggest possibility of using SNPs and phenotype information collected from healthy individuals as a translational research tool for drug discovery to find relationship between a gene and a disease if it is possible to extract individuals in pre-disease states by properly designed questionnaire.


2021 ◽  
pp. 1-8
Author(s):  
Janessa Mladucky ◽  
Bonnie Baty ◽  
Jeffrey Botkin ◽  
Rebecca Anderson

Introduction: Customer data from direct-to-consumer genetic testing (DTC GT) are often used for secondary purposes beyond providing the customer with test results. Objective: The goals of this study were to determine customer knowledge of secondary uses of data, to understand their perception of risks associated with these uses, and to determine the extent of customer concerns about privacy. Methods: Twenty DTC GT customers were interviewed about their experiences. The semi-structured interviews were transcribed, coded, and analyzed for common themes. Results: Most participants were aware of some secondary uses of data. All participants felt that data usage for research was acceptable, but acceptability for non-research purposes varied across participants. The majority of participants were aware of the existence of a privacy policy, but few read the majority of the privacy statement. When previously unconsidered uses of data were discussed, some participants expressed concern over privacy protections for their data. Conclusion: When exposed to new information on secondary uses of data, customers express concerns and a desire to improve consent with transparency, more opt-out options, improved readability, and more information on future uses and potential risks from direct-to-consumer companies. Effective ways to improve readership about the secondary use, risk of use, and protection of customer data should be investigated and the findings implemented by DTC companies to protect public trust in these practices.


2018 ◽  
Vol 93 (1) ◽  
pp. 113-120 ◽  
Author(s):  
Megan A. Allyse ◽  
David H. Robinson ◽  
Matthew J. Ferber ◽  
Richard R. Sharp

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