Pharmacogenetic testing through the direct-to-consumer genetic testing company 23andMe

Abstract Most consumers of genetic testing for health conditions test negative, yet the psychological perils of this are hardly known. In three experiments (N=2,103) participants discounted repercussions of Alcohol Use Disorder (AUD), after learning or imagining that they were not genetically predisposed to AUD. Such discounting can lead people to avoid treatment and to feel safe to continue or even increase their drinking, ironically turning the negative genetic feedback into a risk factor for AUD. This misconception derives from not understanding the Causal Markov condition as applied to this case; once AUD symptoms are present, their ramifications remain the same regardless of whether genes or environments caused the symptoms. Educating participants about this principle mitigated the irrational discounting of threats of AUD, even among Individuals already engaging in problematic drinking, for whom the debriefing currently used by a direct-to-consumer genetic testing company was found to be ineffective in the current study.

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Pharmacogenetic testing through the direct-to-consumer genetic testing company 23andMe

10.1101/098541 ◽

2017 ◽

Cited By ~ 1

Author(s):

Mengfei Lu ◽

Cathryn M. Lewis ◽

Matthew Traylor

Keyword(s):

Clinical Practice ◽

Linkage Disequilibrium ◽

Genetic Testing ◽

Clinical Relevance ◽

Public Awareness ◽

Intermediate Step ◽

Pharmacogenetic Testing ◽

Direct To Consumer ◽

Standard Clinical Practice ◽

The Individual

AbstractBackgroundRapid advances in scientific research have led to an increase in public awareness of genetic testing and pharmacogenetics. Direct-to-consumer (DTC) genetic testing companies, such as 23andMe, allow consumers to access their genetic information directly through an online service without the involvement of healthcare professionals. Here, we evaluate the clinical relevance of such pharmacogenetic tests reported by 23andMe.MethodsThe research papers listed under each 23andMe report were evaluated, extracting information on effect size, sample size and ethnicity. A wider literature search was performed to provide a fuller assessment of the pharmacogenetic test and variants were matched to FDA recommendations. Additional evidence from CPIC guidelines, PharmGKB, and Dutch Pharmacogenetics Working Group was reviewed to determine current clinical practice. The value of the tests across ethnic groups was determined, including information on linkage disequilibrium between the tested SNP and causal pharmacogenetic variant, where relevant.Results23andMe offers 12 pharmacogenetic tests, some of which are in standard clinical practice, and others which are less widely applied. The clinical validity and clinical utility varies extensively between tests. The variants tested are likely to have different degrees of sensitivity due to different risk allele frequencies and linkage disequilibrium patterns across populations. The clinical relevance depends on the ethnicity of the individual and variability of pharmacogenetic markers. Further research is required to determine causal variants and provide more complete assessment of drug response and side effects.Conclusion23andMe reports provide some useful pharmacogenetics information, mirroring clinical tests that are in standard use. Other tests are unspecific, providing limited guidance and may not be useful for patients without professional interpretation. Nevertheless, DTC companies like 23andMe act as a powerful intermediate step to integrate pharmacogenetic testing into clinical practice.

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

10.37419/lr.v8.i2.5 ◽

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.

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

Molecular Genetics and Metabolism ◽

10.1016/s1096-7192(21)00532-1 ◽

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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An exploratory assessment of the applicability of direct-to-consumer genetic testing to translational research in Japan

BMC Research Notes ◽

10.1186/s13104-021-05696-4 ◽

2021 ◽

Vol 14 (1) ◽

Author(s):

Masahiro Inoue ◽

Shota Arichi ◽

Tsuyoshi Hachiya ◽

Anna Ohtera ◽

Seok-Won Kim ◽

...

Keyword(s):

Genetic Testing ◽

Translational Research ◽

Drug Target ◽

Target Genes ◽

Healthy Individuals ◽

Alcohol Sensitivity ◽

Direct To Consumer ◽

Disease States ◽

Multiple Phenotypes ◽

Related Phenotype

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.

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Assessment of Direct-to-Consumer Genetic Testing Policy in Korea Based on Consumer Preference

Public Health Genomics ◽

10.1159/000479290 ◽

2017 ◽

Vol 20 (3) ◽

pp. 166-173 ◽

Cited By ~ 3

Author(s):

Gicheol Jeong

Keyword(s):

Genetic Testing ◽

Consumer Preference ◽

Direct To Consumer

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Secondary Data Usage in Direct-to-Consumer Genetic Testing: To What Extent Are Customers Aware and Concerned?

Public Health Genomics ◽

10.1159/000512660 ◽

2021 ◽

pp. 1-8

Author(s):

Janessa Mladucky ◽

Bonnie Baty ◽

Jeffrey Botkin ◽

Rebecca Anderson

Keyword(s):

Genetic Testing ◽

Secondary Data ◽

Structured Interviews ◽

Customer Data ◽

Secondary Use ◽

Data Usage ◽

Direct To Consumer ◽

New Information ◽

Opt Out ◽

Potential Risks

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.

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