Transparency, consent and trust in the use of customers' data by an online genetic testing company: an Exploratory survey among 23andMe users

Employers have begun to offer voluntary workplace genomic testing (wGT) as part of employee wellness benefit programs, but few empirical studies have examined the ethical, legal, and social implications (ELSI) of wGT. To better understand employee perspectives on wGT, employees were surveyed at a large biomedical research institution. Survey respondents were presented with three hypothetical scenarios for accessing health-related genomic testing: via (1) their doctor; (2) their workplace; and 3) a commercial direct-to-consumer (DTC) genetic testing company. Overall, 594 employees (28%) responded to the survey. Respondents indicated a preference for genomic testing in the workplace setting (70%; 95% CI 66–74%), followed by doctor’s office (54%; 95% CI 50–58%), and DTC testing (20%; 95% CI 17–24%). Prior to participating in wGT, respondents wanted to know about confidentiality of test results (79%), existence of relevant laws and policies (70%), and privacy protection (64%). Across scenarios, 92% of respondents preferred to view the test results with a genetic counselor. These preliminary results suggest that many employees are interested and even prefer genetic testing in the workplace and would prefer testing with support from genetic health professionals. Confirmation in more diverse employer settings will be needed to generalize such findings.

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Genetic Testing before Epilepsy Surgery – An Exploratory Survey and Case Collection from German Epilepsy Centers

Seizure ◽

10.1016/j.seizure.2021.12.004 ◽

2021 ◽

Author(s):

Christian Malte Boßelmann ◽

Victoria San Antonio-Arce ◽

Andreas Schulze-Bonhage ◽

Susanne Fauser ◽

Pia Zacher ◽

...

Keyword(s):

Genetic Testing ◽

Epilepsy Surgery ◽

Exploratory Survey ◽

Case Collection

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The Symptom Discounting Effect : What to Do When Negative Genetic Test Results Become Risk Factors for Alcohol Use Disorder

10.21203/rs.3.rs-1175175/v1 ◽

2021 ◽

Author(s):

woo-kyoung ahn ◽

Annalise Perricone

Keyword(s):

Genetic Testing ◽

Alcohol Use ◽

Alcohol Use Disorder ◽

Genetic Test ◽

Test Results ◽

Markov Condition ◽

Problematic Drinking ◽

Direct To Consumer ◽

Genetic Test Results ◽

Testing Company

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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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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