Direct-to-Consumer Genetic Testing: Value and Risk

Majumder, Mary A.; Guerrini, Christi J.; McGuire, Amy L.

doi:10.1146/annurev-med-070119-114727

Cited by 61 publications

(56 citation statements)

References 42 publications

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“…The visions of future healthcare are the maturation of PGx and PM in the healthcare system and the widespread application of GT in our society [40,41]. However, numerous challenges lie ahead, notably education of the next-generation "service providers" with expertise in PGx and PM as well as the public on the essentials of genetics and genomics [42][43][44].…”

Section: Introductionmentioning

confidence: 99%

Perception of personalized medicine, pharmacogenomics, and genetic testing among undergraduates in Hong Kong

Cheung

Fung

et al. 2021

Hum Genomics

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Background The global development and advancement of genomic medicine in the recent decade has accelerated the implementation of personalized medicine (PM) and pharmacogenomics (PGx) into clinical practice, while catalyzing the emergence of genetic testing (GT) with relevant ethical, legal, and social implications (ELSI). Results The perception of university undergraduates with regards to PM and PGx was investigated, and 80% of undergraduates valued PM as a promising healthcare model with 66% indicating awareness of personal genome testing companies. When asked about the curriculum design towards PM and PGx, compared to undergraduates in non-medically related curriculum, those studying in medically related curriculum had an adjusted 7.2 odds of perceiving that their curriculum was well-designed for learning PGx (95% CI 3.6–14.6) and a 3.7 odds of perceiving that PGx was important in their study (95% CI 2.0–6.8). Despite this, only 16% of medically related curriculum undergraduates would consider embarking on future education on PM. When asked about their perceptions on GT, 60% rated their genetic knowledge as “School Biology” level or below while 76% would consider undergoing a genetic test. As for ELSI, 75% of undergraduates perceived that they were aware of ethical issues of GT in general, particularly on “Patient Privacy” (80%) and “Data Confidentiality” (68%). Undergraduates were also asked about their perceived reaction upon receiving an unfavorable result from GT, and over half of the participants perceived that they would feel “helpless or pessimistic” (56%), “inadequate or different” (59%), and “disadvantaged at job seeking” (59%), while older undergraduates had an adjusted 2.0 odds of holding the latter opinion (95% CI 1.1–3.5), compared to younger undergraduates. Conclusion Hong Kong undergraduates showed a high awareness of PM but insufficient genetic knowledge and low interest in pursuing a career towards PM. They were generally aware of ethical issues of GT and especially concerned about patient privacy and data confidentiality. There was a predominance of pessimistic views towards unfavorable testing results. This study calls for the attention to evaluate education and talent development on genomics, and update existing legal frameworks on genetic testing in Hong Kong.

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Section: Introductionmentioning

confidence: 99%

Perception of personalized medicine, pharmacogenomics, and genetic testing among undergraduates in Hong Kong

Cheung

Fung

et al. 2021

Hum Genomics

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“…In 2018, a best practice guideline was established by the Future of Privacy Forum, supported by several major DTC companies, including 23andMe and Ancestry, which covers topics like integrity, accountability, transparency, law enforcement access, consent and privacy. 38 However, GEDmatch and FamilyTreeDNA are not involved in the forum. 38 It has been noted that DTC companies’ terms of services/privacy policies and law enforcement’s self-restricting regulations—as far as they are in place—are currently the only obstacle to forensic access in the USA.…”

Section: Privacymentioning

confidence: 99%

“… 38 However, GEDmatch and FamilyTreeDNA are not involved in the forum. 38 It has been noted that DTC companies’ terms of services/privacy policies and law enforcement’s self-restricting regulations—as far as they are in place—are currently the only obstacle to forensic access in the USA. 39 Specific legislation on IGG is often absent in Europe, probably because it is a novelty in these countries (although Sweden has allowed it in a pilot setting).…”

Section: Privacymentioning

confidence: 99%

Commercial DNA tests and police investigations: a broad bioethical perspective

2021

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Over 30 million people worldwide have taken a commercial at-home DNA test, because they were interested in their genetic ancestry, disease predisposition or inherited traits. Yet, these consumer DNA data are also increasingly used for a very different purpose: to identify suspects in criminal investigations. By matching a suspect’s DNA with DNA from a suspect’s distant relatives who have taken a commercial at-home DNA test, law enforcement can zero in on a perpetrator. Such forensic use of consumer DNA data has been performed in over 200 criminal investigations. However, this practice of so-called investigative genetic genealogy (IGG) raises ethical concerns. In this paper, we aim to broaden the bioethical analysis on IGG by showing the limitations of an individual-based model. We discuss two concerns central in the debate: privacy and informed consent. However, we argue that IGG raises pressing ethical concerns that extend beyond these individual-focused issues. The very nature of the genetic information entails that relatives may also be affected by the individual customer’s choices. In this respect, we explore to what extent the ethical approach in the biomedical genetic context on consent and consequences for relatives can be helpful for the debate on IGG. We argue that an individual-based model has significant limitations in an IGG context. The ethical debate is further complicated by the international, transgenerational and commercial nature of IGG. We conclude that IGG should not only be approached as an individual but also—and perhaps primarily—as a collective issue.

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“…Experts have repeatedly voiced their own and consumers’ concerns about service providers utilizing such practices (Briscoe et al, 2020 ; Majumder et al, 2016 ). Extant research also shows that consumers’ concerns regarding DTC genetic testing business practices are not limited to reselling genetic data to pharmaceutical companies (Ramos & Weissman, 2018 ), but encompass multiple aspects of genetic privacy, such as access to genetic data by insurance companies, employers, law enforcement, or malicious entities like hackers (Majumder et al, 2021 ). Given the numerous times that concerns have been raised over DTC genetic testing services business practices, one would expect that such practices are perceived as unfair, resulting in adverse effects on consumer adoption.…”

Section: Introductionmentioning

confidence: 99%

Perceived fairness of direct-to-consumer genetic testing business models

et al. 2022

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Although consumers and experts often express concerns regarding the questionable business practices of direct-to-consumer (DTC) genetic testing services (e.g., reselling of consumers’ genetic data), the DTC genetic testing market keeps expanding rapidly. We employ retail fairness as our theoretical lens to address this seeming paradox and conduct a discrete choice experiment with 16 attributes to better understand consumers’ fairness perceptions of DTC genetic testing business models. Our results suggest that, while consumers perceive privacy-preserving DTC genetic testing services fairer, price is the main driver for fairness perception. We contribute to research on consumer perceptions of DTC genetic testing by investigating consumer preferences of DTC genetic testing business models and respective attributes. Further, this research contributes to knowledge about disruptive business models in healthcare and retail fairness by contextualizing the concept of retail fairness in the DTC genetic testing market. We also demonstrate how to utilize discrete choice experiments to elicit perceived fairness.

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Direct-to-Consumer Genetic Testing: Value and Risk

Cited by 61 publications

References 42 publications

Perception of personalized medicine, pharmacogenomics, and genetic testing among undergraduates in Hong Kong

Perception of personalized medicine, pharmacogenomics, and genetic testing among undergraduates in Hong Kong

Commercial DNA tests and police investigations: a broad bioethical perspective

Perceived fairness of direct-to-consumer genetic testing business models

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